Bean town report

I am back!   I made it during my business trip to Boston.  As many of you know, I asked to not travel anymore because it has become really difficult.  Not only is the mobility an issue but it tires me out.  But this team training in Boston came up and they asked me if there is any way I could attend.  I agreed with some help.  Help getting around the city and around the sessions.

So Tuesday, we flew out.  Luckily, there is a direct flight from Salt Lake to Boston.  I was traveling with all my Salt Lake team (5 of us).  Because we were staying in Boston, we took cabs to the hotel which made it easy.  Our hotel was maybe 15 minutes from the airport.  I did see a little crack of the North End from the cab.  The North End is known as "Little Italy".  It has fantastic restaurants and Italian bakeries.

Now some people think traveling for business is glamorous and exciting.  Yes I love getting out of dodge on someone else's dime but it is not glamorous.  We were at the Hilton at Faneuil Hall.  Faneuil Hall is a great shopping and cultural center.  It is in the heart of the financial district of the city.  The Hilton is a nice hotel.  Because of the location, it can be expensive ($500 a night).  Our entire team was staying there, which is about 45 people.  I was really surprised with my view from my room.

Yep.  Those are hotel rooms across the way.  Below was the air conditioners for the hotel.  Surprisingly it was quiet but it was dark.  And I didn't feel comfortable opening the drapes because you could see inside.  I considered being asked to move but I heard the next day that the rooms facing out were really noisy.  Lots of traffic and construction noise.

Our meetings were in a beautiful conference center.  This place was designed for executive conferences with rooms and rooms of comfortable tables and chairs.  They had an open reception area were they sat up breakfast, lunch, and snacks.  Breakfasts were bagels, fruit, coffee, cereal, latkes, mini quiche, and juice.  They had a fridge stocked with water, soda, juices, and teas.  For morning snack, they had fruit, muffins, and coffee cakes.  Lunch was a hot lunch in their lunch area.  They had fascinating food.  My favorite was a mixed green salad with apples, pecans, craisins, and sweet potato cubes.  Who would have guessed.  They had salmon, chicken, rice, various salads, and a fun dessert bar with 2 bite desserts (eclairs!!!).  Then for afternoon snacks, they brought out cookies and an ice cream freezer with various ice cream treats (Haagen Daz bars).  It was really delicious and a nice surprise.  We sometimes get pizza for team lunches in so this was a treat.

The bad part is this is the view from the conference center.  I'm really starting to wonder if I will see much of the city!  Wednesday night, we went out for a team "dinner" of appetizers and drinks.  We went to a Mexican restaurant that had the best fresh Mexican food.  I accidentally had a fish taco that tasted a lot like sushi to me.  They had fresh quacamole which I completely devoured and other passed goodies.  But we were standing for 3 hours which is way too much for me.  After 1.5 hours, I decided to head back to the hotel.  I was luckily able to flash down a cab.

Each night, I worked in the hotel after the conference so it made for incredibly long days but I was able to keep up on my work and projects.  My peers all went out to dinner and such but I just found the city too hard to get around in.  The sidewalks are classic city walks and many in the area were cobblestone which is pretty hard for me.  I opted for room service.  Not phenomenal but the hotel did have a famous chef, Todd English heading it up.  Surprising enough, I've eaten in a Todd English place before in New York.  It was nice it wasn't classic "business hotel" food.  Everything had interesting surprises....like picked cucumbers instead of pickles.  The sauces were interesting too.

On Thursday, the team headed to our tech center to view our research and technology lab.  I already knew this was lots of standing and very difficult to get around so I headed back to the hotel to finish the afternoon working.  I'm sorry I missed the tour because everyone said it was fantastic.  I did get a few shots of Boston on my cab ride back.

Boston has little parks around the city.  It is fun to see around all the tall buildings.

I couldn't get the cabs to come pick me up so I walked a block over
and a block down to get one.  I did get a fun view of the street.

Sadly, this was the extent of the city I saw.  I used to love Boston and running around the city.  It is a vibrant city with lots of culture and adventure.  But I am not up for it anymore.  What I did enjoy is the East coast visit.  I sometimes believe I belong on the East coast.  Those are my people.  And I loved the slight ocean smell in the air.  We had beautiful fall weather with just a touch of crisp morning air.  But no rain (although it threatened).

We left Friday morning.  We wanted the direct flight home and that is an early morning flight.  Brutal...simply brutal.  Yes.  I was at the gate at 5:00 AM ET.  I'm an early bird when flying and I was not sure what security would be like in Boston.  Sometimes it is brutal.  I can just say that 5:00 am ET is not pretty...for anyone.



A view of Boston from the plane.

When we got back to Salt Lake, I decided to get a seated massage.  I have done that in Atlanta and Raleigh.  It is a nice treat after a long flight.

I am glad I went on this trip.  It was really hard and mentally it was tough that I couldn't enjoy the city.  But I am glad I went and made the connections within the team.  I'll be spending this weekend recovering.

Jiminy Cricket

I might or might not have mentioned that when we were in Reno at the conference, I accidentally drug a heavy chair across my toe and dropped it.  It was some significant pain immediately.  It was one of the last session for the afternoon so I went up to the room and took a nap...hoping it would subside. 

Since then, it has bruised significantly but I could still walk on it and unless I touched it, it was not painful.  I figured it was probably not broken and maybe I just broke a blood vessel.   Here we are almost two weeks later and it is still black and blue and it sometimes hurts even when I don't touch it.  So I called my GP, Dr. T and went to see him today.  Seriously this is the first time in I don't know how long that I wasn't on death's door with some form of pneumonia when I visited him.  I felt pretty lucky today since that wasn't the case this time.  He took a look and sent me over to get an Xray.

The Xray lady took 3 views but the last one, she wanted the side of my toe with the other toes out of the way.  Not quite sure how you do that and even though I still have some form of "monkey toes", they were not going to go the way she wanted.  So she decided to tape underneath my toe and tape it to the table.  This lifted the injured toe and bent the top backwards.  It hurt.  Yes it hurt.  I asked her to hurry.

I got back to the room and Dr. T looked at the scans.  He took one look and shrieked.  He was very concerned with that 3rd view and said I dislocated the top ball of my toe during the Xray!  Did it hurt?  Hell yes it hurt!

Going in, I honestly thought I had a fracture across the top of my toe because the toe started bending backwards in an unnatural way.  But alas, I just broke off the side....and dislocated my toe during the Xray.

What the hell do you do with that?  What is the luck?  That is no luck really!!  So the good news is that it is straight and should heal okay but the bad news is because of the dislocation, I have to buddy wrap my toe for 4 weeks!  Since I have to travel for work next week, this is difficult.  And now it hurts..way up in my foot.  And I can't even think about getting another pedicure because it hurts.  So I have ugly toes and pain and tape.

I guess there isn't much that can be done.  I'm hoping the pain goes away soon once the trouble with fidgeting with it today passes.  And I couldn't get mad at Dr. T and his staff.  That little Xray lady is the sweetest ever.  I'm positive Dr. T gave her a talking too after I left.

Pardon the scrappy cuticles.  I can't imagine getting a pedicure right now.  Ouch!

The good news is I got my flu shot today.  Have you had yours?  If not, it's time!

Philip's room

Several weeks ago, Philip and I spent a day over the weekend working on cleaning his room.  We are talking the big clean where we go through the drawers and all.  We used to do it at least 1 time a year but honestly, Philip doesn't want to do it anymore and I think it went a good 2 years.  The reward for doing the room is that we wanted to update the décor.  It has been since 2008 since we redid his room.

We went to Ikea to get some new bedding.  We picked up a few accessories.  He also wanted to hang his various concert posters and albums he has been collecting.  I'm the Mom that won't let him tape a poster to the wall.  We must frame it.  While he has been teased about framing his posters, I do think it is classy.

It was not a miss on me that this is the last time we will be decorating his room. In fact, he asked me if he could take his stuff with him.  Of course, that is part of the reason I wanted to get some updated stuff.  While it is kind of sad that it is one more thing coming to an end, I look forward to the day his room is my craft room!


Here are a few photos of the updated room.

New bedding including a throw.  Concert posters on the wall.



More concert posters.  We also got some live bamboo and
got rid of lots of stuff off the top.  He wasn't quite ready
to toss the bucket of swords.

These are framed albums.  He actually has more now.  We will
need to add them.  We need to update his light switch plate since
 this one doesn't match anymore.

Definitely a grown up room now.

Fall is coming!

It is so funny how fickle I am.  I was just enjoying the summer without it being in the high 90s.  Then comes a few rainy days and cooled off nights and I am in full Fall thoughts.  Last week, I opened the door and could smell Fall.  I have vines down the driveway that always give a little hint of Fall by the leaves turning red at the first sign of a nip in the air.  Today, I broke down and switched out the soap to Fall smelling soap.  I could barely wait to use it.  Now my hands smell like Fall leaves, nutmeg, and cinnamon....and I like it.   Instead of BBQ dinner, I'm only thinking of warm soups.  The ultimate today was the day I craved Apple Crisp.  Fall is coming for sure.

One blind mouse

This afternoon was my follow up appointment on my eyes.  You know, I've never had my eye dilated....until this afternoon.  As you might know, when I saw him in June, he thought I had a small cataract.  I was sad and I pouted and I wasn't sure I was ready to pursue that.  But today, he dilated my eyes and took a look.  He saw no cataract!  I asked him what happened since he said I had a cataract but he didn't recall telling me I had one.  I KNOW I didn't make that up.  Regardless, I am a happy camper this afternoon.  I do still have dry eye and need to keep using the drops during the day and the lube at night.  I honestly haven't felt like I need the drops during the day but he said I do.  So I guess I'll get better about using them.  I will start seeing Dr. W every 6 months to make sure everything remains okay.   I came home with those disposable dark glasses.  I still feel weak from my travels so I used my cane and I truly did look like one of the 3 Blind Mice. 

Reno without Keno

Last weekend, Mom and I headed to Reno to the annual Myositis Conference.  It was held at the Peppermill Resort which is an absolutely beautiful hotel.  We booked a room close to the conference center so we were away from the casino and lots of the riff raff which was nice.  Our room was absolutely beautiful with 2 king beds, a sitting area, and flat screen TV.  The bathroom was huge with 2 double sinks and a Jacuzzi tub.  I think the bathroom was as big as my entire bedroom at home.

I did not go to the conference last year but this is the 3rd conference I had attended.  It was good to see so many people again.  There were also many new faces.  Many newly diagnosed people.  New Medical Board Members.  And some new information.  There were 375 patients/caregivers there in attendance.  This is amazing considering we all have a disabiling disease that makes movement difficult little alone traveling.

Myositis is very rare.  About 1 in 500,000 people get Myositis.  It is tough to find anyone that knows anything about it.  Myositis is an auto-immune disease meaning your body begins attacking itself.  It is in the Muscular Dystrophy family.  It mimicks ALS and often comes with other auto-immune diseases like Lupus, Arthritis, or even Lung and Heart issues.  There are three classifications of Mysoitis:  Dermatomyositis, Polymyositis, and Inclusional Body Myositis (IBM).  Derma attacks your skin and muscles.  People get mechanics hands and rashes on their faces and arms.  They are sensitive to light including normal room lighting.  Polymyositis is me.  It impacts proximal muscles (shoulders and hips) but will impact all muscles so things like swallowing, breathing, heart function, bowels, digestion, etc are impacted.  And then the IBM is a complete muscle failure.  People with IBM decline quickly and there is no treatment or help for them besides trying to make them comfortable.  The only treatment for these diseases are designed to compromise the immune system (turn it off if you will) so it will stop the vigilant attack on your own body.

When I started attending the conferences, the medical advisory panel was trying to establish treatment protocols.  They were thinking there were more then 3 types of myositis and there was tons to learn.  Since my first conference in Las Vegas 4  years ago, they have developed some treatment protocols and they have done much work on identifying different antibodies we have present that can help predict the disease's path.  This can be helpful when trying to figure out the right medications to try or to help the patient plan for their future.  It is great to see all this work done to help us...even though we are a tiny underdog population of very sick people.

You would think this would be very depressing.  But I can't tell you how powerful it is to see and talk to people that are having the same issues as you.  I only know of 1 person in Utah that has Myositis.  You never see it.  You never hear about it.  You often find doctors that know nothing about it.  Most ask me what it is.  So being around 375 people that talk like you and walk like you is amazing.  People are surprisingly upbeat about life even though we are facing such a serious medical condition.  You begin to look past the people in scooters or wheelchairs.  Those that wear long arm gloves to cover their skin.  The limping and slow walking.  People that need someone to lift them out of a chair because it sits too low (even though it is normal).  People that struggle to pour themselves a glass of water.  Or people that struggle to cut their own meat.  It becomes an environment of sharing and support.  It is a place to let down your guard of bravery and independence and allow people to see the sick you.  The you that can't stay up past 9:00.  Or just can't make it to conference room 1 because it is too far away.  Or the you that will skip that afternoon session because you are better off with a nap ...or two.  It is nice to relax and be yourself. 

It is an extremely supportive environment where everyone is trying to learn as much as they can to help them maintain life and learn from each other.  I learn lots in the sessions but I learn even more from talking with people.   Tips and tricks for every day life.  How they take their medications and what medications help them feel the best.  Most people share their journey too.  These journeys are tough and they suck and you just simply can't believe what they have gone through.  It is really an amazing group of people.

There is a core group of people I've been meeting since Las Vegas that I first met online in an online support group.  These are my core people....my inner circle.  I know any time of day or night, I can email them or call them and they will be there for me...and me for them.  These are amazing fighters that despite what they are going through every single day, they focus on the positives and celebrate each day.  This trip, I added one more person to my inner circle.  These are my people....

This is Ann. She is a single lady living in San Diego.  Ann has PM but also has lung involvement.  She struggles to breath and function and it has started impacting her heart.  She had a job very similar to mine but she had to go on disability 2 years ago.  We are meeting next week to talk about my "exit plan" from work.  I want to know how she did it so I can start planning for when I can no longer work.  She is amazing and has 2 of the cutest dogs in the whole world.  Her laugh brings me so much joy.

This is Randy and Jackie.  Randy is part of my core group I met online in 2010.  He lives in NM.  His disease was so bad that when I saw him in Orlando, he was barely mobile with a cane.  He is only 32 and has been unable to work.  He spent 3 months in the hospital when he was first diagnosed and was forced to move in with family for 2 years.  He is finally able to live independently and just moved to his own apartment on 8/1.  This was a huge goal for him.

The other lovely lady, Jackie, is the new addition to my circle.  I first met her at the conference in Orlando 2 years ago.  She lives in Atlanta.  She was a flight attendant for Delta for over 20 years.  She is one of the most elegant people I've met.  And boy does she have the gift of conversation.  She brings that "southern" flare I love.  Jackie has PM too.  She was a quadriplegic for 2 years and had to have 24 hour care provided.  Her husband of 20+ years left her in the middle of the night when she was first diagnosed.  She is a strong woman, has the warmest heart, and is mobile and able to get around. The disease forced her to retire from Delta but it did not steal her zest for travel.  She is on the go and promises we will travel together one of these days.

I didn't get a photo with Shawna.  She is a non-working RN living in Santa Rosa.  She is a wealth of information.  She has DM but it has attacked her muscles so she uses a scooter to get around and she has oxygen she must use.  She has developed a host of other problem including sensitivity to dyes in medications, foods, and clothing.  She is eating vegan and says it has been a life saver for her.

At the conference, they have multiple sessions running through the day.  My goal in attending (in addition to seeing my friends) was to learn about any new research going on, see if I can learn about options for living arrangements as I decline, and continue my quest for information.  I checked off those boxes as well as participated in a Focus group on how the disease impacts us.  Mom participated in some of the sessions with me but also stayed active in the caregiver sessions.  She also took the water aerobics classes 2 days in a row.  The conference provided breakfast and lunch each day which was nice.  We met up with my friends during the evening for dinner except one night.  One night Mom and I went to the seafood buffet.  There was also a Hot Air Balloon race each day we could see from our hotel room.

Hot air balloon race over the city

The casino....or at least a little part of it.

The buffet.  I called it the Disco Buffet because it reminded me of that.  Then every 20 minutes or so, strobe lights would flicker and there were be a broadcast sound of thunder.  Just to add to the ambiance.  So cheesy!

We had a great time and flew home Sunday.  It was nice to fly instead of drive.  We both got home completely wiped out and exhausted. 

I do want to share this sweet little photo.  We got to the airport about 2 hours early.  When we got to the gate, there was a......ummm.....woman there talking to another couple.  This woman was clearly born a man and somewhere along the way, made the switch. But she never gained the feminine traits.  Mom and I both sat and listened and observed.  She was headed to Rome!  She wore a peculiar bun in her hair.  And then it hit me...Mrs. Doubtfire!  We just saw the real life Mrs. Doubtfire.  So fitting with Robin Williams recently passing.  Rock on Mrs. Doubtfire....Rock on!

OHHHHH!  And one of the best things ever happened at the conference.  The head of the Myositis Center at John Hopkins has agreed to see me and provide me a consultation!! She is not accepting new patients and is notoriously difficult to get in to see.  But she is doing studies on Rituxan and since I got Myositis while I was on Rituxan, she wanted to meet with me.  She can't see  me until after the first of the year (her appointments are often a year or more out) and I will have to pay out of pocket since my insurance won't cover it.  But I am so excited to see an expert and see if we can fine tune my diagnosis and treatment plan.  This is HUGE!

Cool your jets Buster Brown!

I thought I better provide an update before too much time passes.  Not a whole heck of a lot has happened since my last post unless of course you consider excessive TV watching and cat petting something worth writing about.  For Labor Day weekend, I found myself being a huge couch potato.  I guess I was tired and not feeling 100% so I just went with it.  The biggest thing I did all weekend was make some cards I needed and did a few loads of laundry!  I didn't even cook.  As you can tell, it was a "non-Mom" weekend.

Today I went to get my blood work done up at LDS Hospital.  It is up in the Avenues part of town that is narrow streets and lots of cars on the street.  There are also lots of trees.  As I was driving down from the lab, I needed to turn left so I creeped up to the stop light, looked both ways and then went.  Much to my surprise, there was an SUV coming up from the left.  I pushed the gas to clear and all was good.  Seriously it wasn't that close of call and I couldn't see him through the retaining wall and all the cars.  This guy put his entire upper body out the window and shook his body and arms above his head while he told me what a dumb ass I was.  I waved and mouthed "I couldn't see you".  Aren't you proud?  No Birdy finger!!  I learned my lesson.  It was just a fleeting moment but wow that is lots of anger coming out of the driver's side window.  We were right by the hospital and across from a major medical office.  Where is the compassion?  What if I just learned some bad news.  Or what if I was just released and making my way home?  I have a general philosophy that around hospitals, you have to drive a little slower, look a little closer, and for god's sake, keep your torso and your cuss words inside your car!  What a JACKWAGON! 

Again, I am baffled by that level of anger.  I was not that close.  It is not like he was inches from my car and had to jam on his breaks and swerve to miss me.  Maybe I am turning into a Ms. Magoo and driving poorly.  That guys is another heart attack waiting to happen...I'm telling you.

Today Mom came into town.  We are flying to Reno to go to a Myositis conference for the weekend.  I hate Reno.  But I am going to make the best of it.  I have a group of friends we are meeting for dinner there tomorrow.  I hope to learn some new things and hopefully come home recharges and ready to keep fighting this miserable muscle disease.  It couldn't come at a better time because I've been having a pity party about my disability and just how fucking hard life is sometimes.  I can't do one thing without planning and explaining and worrying about getting stuck somewhere unable to make it over a curb or unable to walk far.  So I hope this conference gives me hope.  And I hope Mom and I have some fun while there.  Should be good. 

I'll write more about it when we get home.