Cabin Fever Abated

Yesterday was a balmy 46 degrees in the Boston area.  The sun felt good on my face, and I could hear birds chirping in welcome accompaniment to the beautiful sound of dripping, melting, snow.  Good riddance to you, snow mounds and black ice sheets.

My cabin fever feels like a thing of the past.  For much of February vacation week, the Boston area has been freezing cold and alternately snowing and raining icicles.  The streets and sidewalks have been treacherous, and driving can be tense, with so many streets reduced to one-way because of all the snow piled up.  The combination of freezing temperatures, bitter wind and icy snow can lead to enforced cave-dwelling.  I won’t even go into the bad behavior that intensifies around illegal use of handicapped-parking spaces when it’s winter.

Sometimes I can embrace the bad weather, and Marianne and I have marathon scrabble competitions, we try out lots of new recipes, and some napping happens.  We read books, do Facebook, listen to music.  This all gets really old quickly.

Being stuck at home when you haven’t chosen to hibernate can feel isolating, boring, crazy-making.  You are at the mercy of the elements (and sometimes of others to help you).    It’s hard to imagine what it can be like if you are someone for whom it’s easy to strap on your Yak Traks and walk out your door, weather be damned.

I know because I live in both worlds – I can snowshoe on out of here if I want —  but I also hang out a lot with a good friend who uses a wheelchair, so lots of times I don’t.   It’s not having the choice that makes the world of difference between a cozy week at home and a somewhat-smothered existence.

 

I have a love/hate relationship….with our health insurance

Yes, I am very, very grateful our family has health insurance.   You could even say I love having health insurance, especially with Marianne’s appointment track record:   she goes to myelo clinic twice a year; she has annual/semiannual appointments with a pulmonologist, an endocrinologist, a developmental pediatrician and a regular pediatrician, an eye doctor, a neurologist and neurosurgeon, an orthopedist and GI doctors. I am sure I’m forgetting some arcane specialty.  She has many prescriptions (none that anyone out there with opiate dependencies would want – just saying).  There are wheelchairs, toilet seats and durable medical equipment.

But I hate the feeling that we are being nickled and dimed on all fronts of our health insurance interface.   As of this year, we pay $500 for every emergency room visit (and we don’t go because we’ve avoided going to the doctor, we go because Marianne has a medical EMERGENCY).  We do all our preventative care.  We follow doctor’s orders.  We are excellent, compliant patients, and we pay a monthly premium for Blue Cross,  as well as all the strange parts of the bills that for some obscure reason Blue Cross won’t pay (for example, they might pay most of a diagnostic test, all but $13.28 of it).  We pay an annual out-of-pocket rate of $6,000.  Even after we’ve paid that, we are responsible for 10% of all the durable medical equipment costs.   What’s to stop the insurance company from increasing all of these payments/co-payments/deductions from going up year after year?  Nothing, as far as I can tell.

“Durable medical equipment”  (DME) — these are the words that make me crazy lately.  I think this is health insurance catch-all lingo for arbitrary and capricious billing practices.

It’s the recent iteration of the BC/BS policy on DME that’s got me ranting today.  In our medical equipment supplies that arrive every three months (after we pay 10% of the non-negotiable cost that is billed to insurance, and which I am deeply suspicious is hyper-inflated since it is being billed to insurance), we get catheters, saline solution, syringes, GoLyghtly for bowel management (hope this isn’t too much info, but I know the spinal cord people will forgive me or at least overlook my precision) and until recently, latex-free gloves.  That’s so that those of us who are helping with the bowel management can avoid contact with all kinds of bacteria that I don’t even want to name.

But guess what?  After much, much time on hold and in endless phone loops, I just learned that Blue Cross doesn’t pay for those gloves anymore.  Nope, no first-line anti-bacterial, anti-who-knows-what-protection for those on the front-line.   We’re on our own.

Why provide basic preventive care items like latex-free gloves when some hospital and insurance company in the medical realm can generate – and pay, presumably – astronomical medical bills for hospital coverage when my husband or I get really, really sick with some intestinal bacteria contracted because gloves are no longer deemed medically necessary for care-givers?

And here’s the amazing fact:  a box of 100 latex-free examination gloves costs $3.10 on the internet.  If I bought them from the medical supply company, that same box is $36.65.  Although they claim that they bill insurance a discounted rate, they could not tell me what that rate is.  I bet it’s more than 10 times more.

Round and round it goes.  Pass the buck to whoever will/can pay it.

Obfuscation or beclouding, is the hiding of intended meaning, making communication confusing, willfully ambiguous and harder to interpret (from Wikipedia).  Homework tonight:  use it in a sentence with the words “health insurance……”

 

 

 

 

Wheelchair yoga lessons

Sa Ta Na Ma. Sa Ta Na Ma. Sa Ta Na Ma.

Marianne repeated these beautiful words after Diane in our chair yoga class yesterday.

Birth, Life, Death, Rebirth. A mantra meant to remind yoga practitioners of the cyclical nature of life and of our breath. A tool to focus our mind on our breathing. Deeply relaxing. You can sit in a wheelchair or on a yoga mat and steady your breath and your mind.

Diane, a yoga teacher from Newton, MA, has recently started a practice called Sit With Yoga. She brings her practice to seniors citizens, and now, to us too . Chair yoga is accessible to all, not just the twisty-bendy types in the yoga studios.IMG_3447

Marianne learned the very basic history of yoga, first, that it started over 5,000 years ago in India by monks who were meditating to still their minds. Because they found it hard to sit still for so long, the monks added body poses as a way to further focus their minds. B.K.S Iyengar, in India, took the poses further and added the concepts of alignment as a way to strengthen his own body and powers of focus.

IMG_3434

Lions’ breath, cat and cow pose, namaste, twists, shavasana, and my favorite, goddess pose. All poses I’ve done on my mat in yoga class, and all poses that can be done in your wheelchair or chair.IMG_3430

Namaste means “the light within me salutes the light within you.” It’s how we end our chair yoga class. Thank you, Diane, for this gift of yoga and accessibility on a snowy, cold January afternoon.

Trip Interrupted: Mad River Barn in VT will have to wait, unless you get there first…

Although a major snowstorm on a Thursday night after December break means an extended school vacation, we were sorry to miss out on our weekend in Waitsfield, VT at the Mad River Barn.

This B&B in Waitsfield, VT was recently bought and renovated – complete with a wheelchair-accessible room and bath, which we were hoping to review this weekend. Even better, the inn is very close to Sugarbush and the  Vermont Adaptive Ski & Sports program at Mt. Ellen, and a much more affordable option than the Sugarbush Resort.  The inn has a restaurant, pub and game room and is in the heart of Mad River Glen – a great location for a long weekend away from Boston.   I spoke at length with Heather, the owner, who spent a lot of time with me on the phone and was then more than understanding when we had to cancel at the last minute due to inclement weather.  (Getting stranded in a snowstorm with a teenager in a wheelchair is an experience I hope never to have!)

We’ll re-schedule our stay there but if you go before me, please post on TravelByWheelchair’s FB page!

Boston University’s “Project Team” is recruiting for their spring program

The barrier could be as simple as getting through a crowded room using a wheelchair or as complex as getting across a crowded city street using a wheelchair, using public transportation (using that same wheelchair) and navigating to the counter of popular city coffee bar to order your favorite cup of joe.

Whether the barriers are (seemingly) simple or obviously complicated, people with disabilities (those who use wheelchairs or those who don’t), face barriers in their everyday environment that many of us who do not have the same disabilities do not recognize as barriers. And that’s okay – as long as we listen when we are informed of the barriers and move to action to help eradicate said barriers.

My daughter Marianne recently participated in a program, called Project Team, that was designed to help people with disabilities advocate for the removal of barriers they encounter in their daily lives.

Project Team was developed by Jessica Kramer and her team at the Boston University Department of Occupational Therapy to work with young people with intellectual or physical disabilities to name barriers in their environment that keep them from reaching their goals and to be proactive in making changes so that the barriers are removed. The participants, aged 14 to 21, meet twice weekly for 8 weeks with peer mentors and team leaders to name barriers that they confront and to create game plans to change the environment. The goal is for these young people to learn to externalize challenges so that the obstacles can be removed – rather than simply giving up on one’s goals because it’s easier.

Marianne, who is 14 and uses a wheelchair, participated in Project Team this fall in Newton, and let me assure you, she is using her newly-developed advocacy skills daily!

There will be a group running in the Dedham/Sharon area after the February public school break, and if you are a young adult with developmental disabilities or know one who could benefit, please contact Jessica Kramer to find out more information. Both Marianne and I recommend Project Team highly.

Click here for more information on the spring recruitment: Recruitment Flyer_Trainee_v1.1

What empathy is and why it matters

Rarely, if ever, does an empathic response begin with ‘at least….’ says Dr. Brene Brown in this video.

Brown, a researcher and professor at the University of Houston, speaks here on the difference between empathy and sympathy, and why empathy connects us but sympathy creates distance.

We all search, at times, for the “right” thing to say when someone shares their vulnerability or pain with us. Sometimes there is nothing to say (reaching out to hold their hand or just nodding, “Ahhhh….” can be more than enough). But trying to find a silver lining (the “at least….” comment) never makes things better and can only create distance and anger on the part of the listener.

Dr. Brown says that in Texas, a common (sympathetic NOT empathetic) response to someone’s sadness or worry is “Bless your heart.” Her imagined antidote to that comment is a t-shirt emblazoned with this: “If you bless my heart, I’ll punch your face.” I can empathize with that sentiment, having heard many variants of “bless your heart” in my lifetime.

Accessible lodging options in Mad River Valley, VT

The Yellow Farmhouse Inn is a bed and breakfast in Waitsfield, VT – in the beautiful Mad River Valley – with high Trip Advisor ratings and an ADA-accessible room (the Morgan Ashlee room).  Mad River Valley has a host of all-season activities, including two ski areas: Sugarbush Resort and Mad River “ski it if you can” Glen.  I have not been to this inn myself, but I have spoken with the owner and it’s on my “to go” list.  They currently have a special ski package being offered through Trip Advisor.   Prices start at $219/night.

Vermont Adaptive Ski and Sports runs accessible ski programs through the Mt. Ellen Base Lodge, at Sugarbush Resort in Waitsfield, VT.  We plan to check it out with Marianne this January and will let you know how it goes.

Sugarbush Resort does have some ADA-accessible condos for rent at their luxury, ski-in/ski-out Claybrook Residence.  These units are in a hotel-like set-up (general entrance is through a main lobby, and the units are accessible by elevator) and individually owned.  They are very pricey, starting at $880/night on a non-holiday weekend for a 1-bedroom condo unit (which sleeps 4).   Because the units are individually owned, they do not meet standard ADA requirements, and so although I was assured doorways were wider and there were grab bars in the bathroom, none of the units have a roll-in shower.  The fitness center, in the building, is accessible and has accessible, roll-in showers.  There is an outdoor heated pool, but there is no lift for pool access.

Roslindale Village for accessible holiday shopping? Bah Humbug

Thought we’d do a little Christmas shopping in one of our old haunts, Roslindale Village.  It’s November 30:   Annual Holiday Tree Lighting Day in the Village. (Here’s my first peeve in what turned out to be a bust of a day.  Really, a “Holiday” tree? It is a CHRISTMAS TREE.)

Santa Claus showed up on Engine 16 (although he blew past the kid in a wheelchair with the barest of sideways-glances) to pose for pictures with able-bodied kids.  The Christmas Tree was lit.  There were Christmas songs.  Ho hum.  Well, okay, we’ll go shopping then.

Roslindale’s Main Street, an organization dedicated to promoting small business in the area, boasts on its web site that their mission is to promote Roslindale Village as an appealing destination (um, not if you’re in a wheelchair, it’s not) and furthermore states that they are pedestrian-friendly.  They are decidedly not.IMG_2331

IMG_2326We were off to a good start with an accessible parking lot off the main street, which had plenty of ADA spaces and a ramp down to the village area.  Things went quickly downhill from there.  We couldn’t access any of the enticing stores full of Christmas cheer:

– the Pop-Up Shop, featuring locally made retailers and some very yummy looking cupcakes  =  not accessible

- Birch Street House & Garden, had lots of interesting Christmas items but…. not accessible

-Joanne Rossman’s, another intriguing boutique = not accessible

– Really excited to try my sister-in-law’s favorite wine and cheese store, the Boston Cheese Cellar but…. not accessible

IMG_2335The “shop small and hot chocolate tasting” sign next-door at Kitchen Central (no website) beckoned.  Alas, they were NOT ACCESSIBLE either.

Ironically, most of these stores have a rear entrance in a charming patio area which looks fairly new and as if it could have been ramped without much fuss.IMG_2345

So I’d say pretty much all you can do if you’re in a wheelchair is buy food at the Village Market (an accessible food market) or buy dinner at either Delfino’s, Sophia’s Grotto or Birch Street Bistro (the entrances were accessible but I didn’t check out any of the restrooms – I’d call to check before I went if I were you).

IMG_2356My biggest disappointment was how far downhill Fornax Bakery has gone.  You can kinda, sorta get in (the ramp is definitely not to code, it’s a tight fit for a wheelchair through the door, and there’s not really space for a wheelchair at any of the tables) but don’t bother: the hot chocolate was not hot and it was lumpy, and the muffins were stale.

IMG_2358 Oh, and if you have a tacky-dress emergency, you can park here and just wheel right into the garish boutique on the corner.  That store looks like a real gem, and it’s accessible!

 

Quick, enjoy these Boston trails before we’re snowed in for the winter!

Seamus and friend along the banks of the Neponset River, Dorchester

Seamus and friend along the banks of the Neponset River, Dorchester

Last week, my faithful companion (Seamus the dog), his beautiful Berner companion Poppy (named after Boston’s own Big Papi), and I walked the section of Boston’s HarborWalk that comprises Dorchester’s Pope John Paul Pius II Park.  The 65-acre park is on the banks of the Neponset River.

Pope John Paul Pius II Park in Dorchester

Pope John Paul Pius II Park in Dorchester

The park has been reclaimed from its prior use as a landfill and now has over a mile of paved trails (wheelchairs work well here), a playground, parking lot complete with ADA spaces and a couple of port-a-potties (including a wheelchair-accessible one).

Neponset River Trail

Neponset River Trail

In either direction, the Neponset River Trail extends (for a total of 2.5 miles) along the Neponset River, its salt marshes, and the Boston Harbor.  The trail consists of both gravel and paved trails, and although I didn’t explore the entire trail, according the the website, it’s “consistently flat.”  Also known as the Neponset River Greenway, the trail will be 10 miles long upon completion.  It will eventually connect the Blue Hills Reservation with Boston Harbor;  see The Boston Globe‘s June article on the state’s commitment of capital funding to finish the project.

Since you’ll be in the area, don’t miss a chance to stock up on delicious meats, a traditional Irish breakfast, or Barry’s tea at the Butcher Shop Market on Adams Street in Dorchester.  The shop is wheelchair-accessible, although the doors are not electric.  Important note:  there is a big parking lot behind the store but it has been undergoing renovation for a while now.  If you need to park in ADA spaces, you might want to call the market to find out the status on the parking lot.

And Ginger Betty’s Bakery in Quincy is close enough for a detour!

Gingerbread work of art featuring Boston

Gingerbread work of art featuring Boston

A housekeeping item

I love color and pattern.  I always opt to put rugs on floors for warmth, softness and atmosphere.  Until, that is, there was a wheelchair in the picture.  Then rugs became a nuisance.  I cannot tell you how many times Marianne’s wheelchair frustratingly got all caught up in a rug.

Here’s the solution:  Chilewich floor mats.

Chilewich floor mat

Chilewich floor mat

They give me much of what I want in terms of color and depth, and even a little padding under foot, but they can be washed with a floor mop and swept with a broom, and wheelchairs travel easily over them.  They’re not cheap, but I bet you could do some internet research and find something like these mats for less.