Baltimore/Johns Hopkins visit

Last week, I had a follow up appointment at Johns Hopkins.  I can't believe it came around so quickly!  I timed it out so I could head to Baltimore on  my way to Nola's for a visit.  I flew to Baltimore the day before my appointment.  I didn't go explore much but I did head to my hotel and got settled in.  I picked up a great deal on a hotel on Priceline and ended up at Hotel Monaco in the downtown area. It really was a beautiful hotel with lots of character and charm.  I decided to have dinner in the hotel so I could rest my muscles and my mind and be ready for the next day.

Inside Hotel Monaco.  Look at that architecture!

The menu was....weird.  So I ended up with a cheddar and stout fondue
with in house made chips.   It was...zesty and a real heart stopper but it was yummy.

I ate during happy hour so wine was $4 and appetizers
were $8 (see above photo).  Don't mind if I do.  Seeing the
groups there reminded me of my years of business travel.

In the  morning, I got up super early because my appointment was at 8:00 am sharp.  So I was up and at 'em.  I had a rental car so I checked out of the hotel and started heading towards the hospital.  It was cloudy and overcast in the morning.

The bay.  I'm getting pretty familiar with this area!  It is my preferred
place to stay in Baltimore and is about 10 minutes from Johns Hopkins.

As you drive down "Eastern Avenue", you drive past all these brownstone homes and through historical towns.  Germantown, Little Italy, and even a hispanic area.  It was interesting to see Moms trying to navigate the "city" to get their kids to school.  Lots of people bustling around.  I thought these lighted decorations across the street in Little Italy were very cool.  It reminds me of growing up in Kaysville. We had street decorations similar.

And then I pull into Johns Hopkins campus.  The Myositis
center is at the Bayview Center.  I think it is one of many Johns Hopkins facilities.

The Myositis center is in building 301 which is on the side of the older
hospital.  There brilliant minds in there that help us Myositis patients
when no one else can help.

 I had a good visit.  I was very nervous because I started with both physical therapy and occupational therapy.  I had a flight out later in the day so I was very concerned I would get too worn out to travel and make it through the weekend activities.  But both therapists were great.

The occupational therapist did a pretty thorough evaluation of my movement and limitations.  We mostly focused on my hands.  Part of the issue with IBM is lost of strength and function at the finger tips.  I have significant loss of strength but they were amazed I could still do things like doing up buttons, picking things up from a counter top, and cooking!  We talked about the importance of keeping whatever strength I have so I can maintain independent living.  I agree whole heartedly!!  So we worked with theraputty.  They gave me a bunch of exercises to work with which was perfect.

Then I met with the physical therapist.  We spent a bit more time evaluating where I was.  I had to walk as quick as I could for 2 minutes.  Much to my surprise, I was able to do 2.5 laps around the office.  I was also timed in going from sitting to up and walking and turn around and back to sitting.  This  was  hard for me.  Then we went to work on some exercises.  We mainly focused on my core (tummy) muscles becuase there are basically none.  He gave me some very easy exercises to do to start to build my core muscles and "reengage their memory".  We also worked on some ankle exercises and tricept exercises (those are traditionally non existent for IBM patients as well).  And then we spent lots of time talking about my current work out and fine tuning that.

After all that therapy, I met with Dr. CS.  She was very busy and running way behind with a hard stop time for a luncheon so she wasn't the most relaxed but felt good about how I was doing.  She did some muscle measurements and discovered I have pretty much maintained over the last 6 months which is good.  We talked more about how my disease is not typical and there is probably a reason why but we don't know that yet.  They are still learning the basics about Myositis.  She indicated here was a clinical trial for IBM that she would love to see me in but I do not qualify due to my cancer history.  But because she is part of the trial team, she wants to help me with any learnings they come up with.  So she asked that I come back in a year so we can catch up.  She is also very interested in my DNA and blood to do research on.  So I provided another vial for comparison to the vial they collected in January.  Wouldn't it be exciting if they made further discoveries based on my DNA!

After my visit, I took a small flight out of Baltimore to Raleigh.  It was wonderful because we flew low enough that I could really see the countryside.  I couldn't help but take photos.

Flying out of Baltimore.  Bye Maryland.

I missed the memo on how to live my life on the water complete
with a private boat dock.  It is fun to dream what that would be like.

I was fascinated by the clouds we flew by and around.  They were light and fluffy and stood still as we pierced them or went by.  I took a few photos just to remind myself how surreal they were.