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!!!

My home office

After many years of working at home, I'm finally having a required home office visit.  Part of this is due to my licensing and registration for my job, but part of it is because my company is cautious which is fine with me.  The problem is, I have moved and no longer have a dedicated office.  My office is also my scrap room, storage unit, Philip's dressing room, drop off zone from shopping, and general dump center of anything I don't know what to do with.  Well, I am just too proud to have someone come visit to audit my office in the state it was in.  So I finally got it all tidy and established.  Yes it still needs work.  I'll keep working on it but it is better than it has been since I moved!  I'm sure my audit will go well, but just the work "audit" instills fear!!

I wanted to show you when the end result is.  I still love the double desks in the middle of the room.  It means I can look out the patio doors and not have my back to the room.   I gave you a quick shot of my amazing award trophies I have won for my work.  I finally brought them home since I'm not in the office much anymore.  Here is a little video of my office/scrap room.  Best it's looked since I moved in yet!

The office audit went well.  It was great to see my boss Sean.  We enjoyed a nice lunch too.

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.

Party like is November 28, 2016

One thing Bella loves is playing the cat fishing game on my phone.  It is an app designed for cats and it makes her absolutely bananas.  It is pretty cute. What is not cute is Friday, my phone was on the couch and she wanted to play.  But her game was not on and somehow she deleted some of my phone apps...including my "notes" app which basically has my life in there (passwords, lists, addresses, etc).  I didn't notice they were gone until Saturday night.

After much research, I realized the best option was to restore to my last back up of my phone.  But that was November 28, 2016.  What I didn't realize is this would make my world go back to that day. All photos, contacts, etc would be reset to whatever it was that date.  I didn't have much choice so away I went to restore.  Except it was in the middle of the update and I thought it was done and unplugged my phone in the middle of the update by accident.  This caused my cell phone to have a fatal error.  Suddenly it wouldn't even stay turned on.  I couldn't get it to connect to iTunes which is the life line for iPhones.  I was totally screwed.  I messed with it for quite awhile and at 2 am, I decided to go to bed because I was getting no where.

As it usually happens in these sort of situations, this morning I was more clear headed and got to it again.  My phone would not stay turned on long enough to connect to iTunes.  I keep rebooting it and rebooting it.  Plugging in and unplugging.  I was sure all was lost.  But I tried again and I did get a screen to restore it.  I almost did a happy dance!!  The bad news is it first did a factory reset.  Then restored to November 28, 2016 which was my last back up.  I am not sure why the phone hasn't backed up since then but that is "spilled milk" at this point.

So now my world on my phone is November 28, 2016.  It has forced me to look back at that time that was a very painful time for me.  Fritz and I were in the throws of breaking up.  It had been a month since he spoke to  me.  I was severely depressed and had zero self value.  My music on my phone is back to that date so all those songs we used to listen too were back.  My recent photos are all gone.  All the work I had done to erase Fritz from my life was reset and those memories now front and center.  And all those notes, people, and clean up I've done since that time are erased.  Back in November 2016, I had not started dating again.  So all those people I've met since then?  Erased from my phone.  Not a single phone number or photo.  Talk about a sort of fresh start from that!

In some ways, it is interesting to look back and see how far I've come since then.  I didn't hurt me today to see those photos of Fritz and I when I thought we meant something to each other.  I just deleted them all again.  All those guys I've met and dated since then are erased but maybe that is a good thing.  It is like a "rebirth" to remind me how resilient I have become.  And I got to make a conscious choice to delete all those painful memories one last time.  Not because it hurts to bad to see like last time but because now, I have moved so far past that period of my life.

I'm very thankful I had a backup and could restore it.  Now I only need to remember the last 10 months of my life that mattered.  I have the really important stuff I needed.  My phone is working again. And luckily, I caught up on much of my scrapbooking so I have photos up through July printed.  There are lots still missing but I think I can muddle through okay.

So my reminder today is to be sure to back up your phone regularly.  And if you use an iPhone, be sure to stay plugged into iTunes until you can "eject".