Johns Hopkins visit

I know many of you know and are anxiously waiting for an update on my Johns Hopkins visit....which happens today.

I flew into a Baltimore last night after working all day.  While it sounds nice to save a vacation day, it made for a very long day.  I landed in Baltimore at 11:30 last night.  I used a wheelchair to wiz me through the airport and help me with my super heavy suitcase to the taxi.  Once there, I was whisked away to my hotel.  I was able to score the Marriott on the waterfront I really like.  Even with the Hopkins rate, it was still close to $200 a night but included taxi vouchers which saves me about $20 each way. I was issued a room with the worst view yet!  It looks at the parking garage next door.

Needless to say, I slept in until my alarm went off at noon ET.  I hurried and got ready and was in a taxi by 1:30.  Unfortunately, we had traffic and I walked into the Myositis center with seconds to spare before my 2:00 appt.  and then I waited....and waited....and waited.

Finally at 4:00 Dr. Christopher-Stein came in.  Apologizing as usual.  She is very busy and very popular.  Turns out she had a schedule issue where there were 3 of us from out of state at the same time.  You would never know she was totally swamped.  She took her time and listened.  She patiently fed information to the student she was working with.  She asked me questions.  Answered all my questions.  Then she did my strength and physical exam.

Can I get up from a chair without arms?  No
Can I step up a 6 inch step? No
Can I tippy toe or heal walk? No

She has a strength measuring  machine where it gives a quantitative number to my strength of each muscle impacted by my disease.  Let's start with some good things.  My deltoidsnwere much stronger.   My quads were good and the same as last year.  But my entire left side is weaker.  My triceps, wrists, and ankles were weaker...which is why my balance feels off. She said they were to a point I would have no problem qualifying for disability.  I've reached a level of decline that severely impacts my daily living.  No shit!

Things I can do to help? Do at home PT.  Keep losing weight.  There is no extra tests to be done.  No change in meds.  I do not qualify for any clinical trials.  And she said I should be using a quad cane instead of my "single stick" cane.  I asked about going to another doctor closer to me.  She said they are still the best and the home source for other Myositis clinics across the nation.   That especially since I don't have good medical support at home, she felt it important I come to see her.  I can skip a year if I want/need.  I will be looking for a new doctor at home.

She felt like I was doing good overall and said I looked great.  I worked hard to get my weight back down and I did.  Now for my next 40 lbs.  We hugged twice and bid farewell.  I caught my cab back to the hotel.  I stopped short and got dropped off at Flemings.  They have Happy hour specials on food and drinks so I had a prime burger with fries and 2 margaritas.  Yes....2.  She brought me a third for free but I just couldn't.  I was already worried how I would walk back to the hotel.  Dinner was $28 which is a great deal in a Baltimore.  I did make it back to the hotel just fine.  Now I wish I had that margarita!!

Tomorrow I fly to Tampa.  Monday, Jennie and I catch our cruise to Cuba!  It is finally here!  Nola did send me a text that they quit issuing visas for Cuba.  I am a little concerned but figure we might still fly under the radar.  I can't imagine they will close the border that quickly.  But who knows!  We will see....

So not great new but not surprising.  I'll keep focused on the positive and "running" as fast as I can from this horrible disease.   One day it will catch me but not today!!!