On To Pine Cones and Pine Needles

Acorns were falling in huge abundance a week or two ago. Today was very windy, and the pine needles fell like snow, the pine cones dive-bombed all around us. Sitting in the house today, we heard almost continuously all afternoon ... pow! pow! pow! as the pine cones hit the roof.

Our yard is pretty minimalist, meaning we have no grass and not much ground cover (that is, the yard is mostly dirt). The pine trees that surround the yard keep the grass from flourishing. We used to put down mulch every year but discovered that was raising the level of the yard and contributing to the water flooding problems we now have. So, we've left the yard "as is" ever since.

As a result, this time of year, when the pine needles have covered the yard, this is the time it looks best. We are thinking of doing more with the yard after the front walk is rebuilt, but that's still TBD. I bet a comprehensive planting of ground cover would cost a bundle, so we'll probably have to take it slow on that front.

Below is the view out the kitchen window and a few other views of the needles and cones. You can see our yard statuary ... two armadillos and a lion.

Fast Maintenance

When my brother showed up this morning to continue work on the first repair project, he had a surprise. His son was with him! It was a huge help to him to have my nephew on the job because 4' X 8' masonite sheets are a bit hard for one person to install. And, the same is true of 10' or 12' redwood siding. Together, they worked like a well-oiled machine and got the repair virtually completed this afternoon. All that remains will be to re-stain the wood, which won't get done until after the front walk is replaced (that work is scheduled to start Saturday). Yoohoo!

(Unfortunately, I forgot to snap a picture of the entryway with all siding back in place. But, man, it looks good!)

Home Maintenance

In the interests of full disclosure, let me start this post by stating the facts: I am not handy. I am completely and utterly not handy. In fact, when I start projects, I often end up making things worse by spawning the need for new projects to really get the job done right. So, I'm not so good at projects around the house and I'm reluctant to start up the ones that I have the skills for because I know the project will become much, much bigger before it's completed.

My lack of handiness is a bit surprising when considering my upbringing. My father is perhaps the handiest person on the planet (well, he was into his mid-70s, when he finally had to break down and hire a handyman). He lived in and maintained for 25 years the house Skip and I now live in, he built the house my parents retired to and he general contracted a Habitat for Humanity house after he retired. I spent many, many weekends as a kid helping him out. He was a hard worker who kept his kids busy as helpers. Unfortunately, I think I missed out on some key learning opportunities when I figured out in my teens that by sleeping in I could avoid getting drafted into helping out on Saturdays.

As a result of all this lack of handiness, our house maintenance has been a bit neglected during the 20 years we've lived here. We've been able to hire folks to handle the big jobs that couldn't be left undone ... new roof, staining the outside, painting the inside. But the smaller stuff has gone largely unaddressed. For instance, the silverware drawer in the kitchen has been screwed up for too many years to mention.

Over the last year, we've developed some troubling problems that are all associated with water ... water getting into the house in a couple of different places. I have been struggling with how best to handle completion of the projects to correct these problems. I had a brainstorm one weekend day whilst visiting my parents. My brother was there too, and he was talking about his project to rebuild the deck at his house. I realized he was capable of the kind of work that needed doing and he's got some time and could use some money as he's out of work right now, having been laid off some months back.

He started in on his first project last week. He's doing a great job. And, he grew up here so he knows this house as well as I do. He's got my dad as a sounding board. They're having a great old time talking masonite and galvanized nails. This is a pretty unique house (you don't find too many redwood houses of modern design in New England), and I'm glad that my brother is able to glean so much info about it from my dad while he's still around and of sound mind. If we'd hired a handyman or carpenter to do this work, I can't believe it would get the same level of care and attention to detail combined with respect for the structure that we get with my brother on the job.

The work my brother is doing is at the front entry. Today, we hired a mason to rebuild the front walk that leads up to the entry. We've taken down a bunch of the yews at the front of the house, in part to make way for my brother's work and in part because they were quite overgrown and in need of replacement. I see other work we can do that builds on these first two projects. Work that will definitely improve the look of the front yard. Suddenly, home maintenance feels like a good thing, instead of the burden it's always felt like before. Yay!

Caregiver Aids #11: Grabbers

The first of these we got as a Christmas present from my sister, probably about 15 years ago. At the time, I thought, why do we need one of these? She thought it would be useful for Skip to reach items on high shelves in cupboards (at this time, Skip was still ambulatory).

That first one probably sat unused for years before we started taking advantage of it. Its usefulness became apparent quickly. Now we have one in the laundry room (next to the kitchen), in the bedroom and hanging from Skip's table that she uses at her wheelchair when in the living room.

Since Skip's hands are numb and her fingers no longer dextrous, she often drops things. These grabbers get called into action multiple times every day. Since I'm the one picking up the item on the floor, they help me a lot.

These grabbers are available all over the internet. I searched on "grabber picker upper" and got a ton of hits, so they're a cinch to find. We did once buy a model that had opposing suction cups at the end rather than the grabber design shown in the photo. This item proved to be useless (at least for us), because the cups kept sticking together.

Feeling a Bit Restless

Life is going along pretty smoothly. Status quo. Steady state. Same old same old.

I haven't been too cranky, though maintaining good spirits around bedtime remains a challenge. Skip is doing fairly well, except for a couple of wounds on her "undercarriage" that aren't healing readily. Work keeps me busy. All the routines around the house are comforting, and help to keep us grounded and feeling that life is in order.

I don't want a crisis to shake things up. But I do want to inject a bit out of the ordinary into our lives. Something like a trip into Boston to see live theater, a day out with Skip to "leaf peep" the fall foliage, or maybe a day where MW stays with Skip for the day and I run off to be irresponsible and play some poker at a Connecticut casino. Maybe we should take in a Red Sox baseball playoff game at Fenway Park (these tickets are normally unavailable, but wheelchair seats can usually be had for just about any game). At this point, I think I'd be happy just to go to a movie in a theater and eat too much buttered popcorn.

Whatever we end up doing, I've got itchy feet and they want to take me off to do something out of the house and out of my daily routines.

A Lovely Change of Pace

Last Saturday afternoon, Skip and I drove up to coastal New Hampshire (there's a little tiny piece of Atlantic Ocean coastline in New Hampshire, shoehorned in between Massachusetts and Maine). We went to visit a friend of ours, C. We got to know C over the years when we visited at the home of a friend in common. We like her and enjoyed her company but never socialized with her except at our friends' house.

Then, she came to Maine on our 2 week vacation in July. We got to know her much better and our friendship grew. We really enjoyed her company, her perspective on things and her sense of humor.

The second to last day of our vacation, she spent a good part of the day in the emergency room of the local hospital because of a killer headache. Even with an MRI (I believe an MRI was taken rather than a CT Scan, but I could be wrong), the ER docs couldn't identify the root cause, so they told C it was the result of a sinus problem and sent her off with some prescriptions. The day after she got home from Maine, she had a stroke!

She spent about a week in the hospital. After going home, she had lots of therapy and nursing visits to help her get back to the point where she could walk steadily, think clearly, drive safely and get back to work. She is doing all those things now, though transitioning back slowly into work. She also says her short-term memory is a bit dicey.

We wanted to see her, to see how she was doing, get some time enjoying her company, and take her out for dinner. C suggested if the weather was good, we could go down to Hampton Beach and walk along the sea wall, which is accessible. Skip loves the beach and this sounded like a lovely idea. So, we drove up on Saturday afternoon.

It was a cool, early fall day in New England. The trees were already turning a bit, though the fall foliage wasn't yet at peak. We picked C up at her apartment and drove the 5 or 10 minutes over to Hampton Beach. I'm sure the place is hopping in the summer; on this cool day, it had plenty of folks, but the beach was virtually empty. All of us were up walking the sea wall or browsing the shops that were still open (many were closed for the season).

The sky was a clear blue. The sea below it a beautiful, dark blue. Lots of breakers at the shore. Light sea breezes that were cool but not uncomfortably so, since we all wore light jackets and baseball caps. We walked for a bit, chatting and enjoying the sites. Skip was feeling a bit weak, so we took a break with a late lunch/early dinner at an informal cafe across from the sea wall.

As we headed back to C's home, we took a roundabout route so C could show us a bit of the area. We got talking about apple picking and she ended up taking us over to a nearby orchard that was known for their pies as well as their apples. By chance, we arrived at the tail end of a harvest festival and the place was jammed. We would have loved a taste of cider donuts (if you've never had a cider donut, you are missing a great seasonal treat that Skip and I love) but the line was about 100 deep (not a huge exaggeration). Instead, we picked out some Macoun apples (another favorite of ours, a variety that's typically only available at orchards and not in supermarkets), cider and a few other goodies to bring home.

We took C back to her home and drove the hour plus back home in the fading light (don't you hate how early it gets dark as the year progresses?). Of course, the pups were delighted to see us (Skip's aide, MW had watched them for us), which always makes for a wonderful homecoming.

We've been enjoying those Macouns. And, while writing this, I polished off a cold glass of cider.

It was great to visit with C. To see that she's well on the mend. And, best of all, to enjoy her company taking in the beach at Hampton. I hope we do it again soon (before the weather gets too cold).

30 Posts, 31 Days

I notice that my posting frequency has been dropping with each month since I established this blog.  September saw only 8 posts, the lowest so far in a month.

I find blogging both fun and personally enlightening. I do my best thinking when I have a conversation or write about something, as I'm not a particularly introspective thinker. So blogging is a good tool for me to think some things through. And, of course, I am my own favorite subject, so I love to write about me!

When I first got started, I had lots of stuff to write about. I documented the kinds of things that made me cranky, scoured around for recommendations on the internet for how to deal with anger, wrote about the aids that we use here at home to help with caregiving. I also didn't have many blogs that I read, having not yet found the large community of MS bloggers and the smaller community of MS caregivers. Reading those blogs can take a surprising amount of time (time well spent, I might add).

Part of my drop off in blogging, I believe, is just getting out of the habit. I plan to post something at least 30 times this month. This should get me back into the habit. So, be prepared for lots of stuff here, some good, some drivel. I look forward to a fun October.

The Sky is Falling! The Sky is Falling!

Our house is surrounded by trees, as you can see by the photo above. Very, very large trees. Most of them are pines and white oaks. A few maples, alders and other varieties are sprinkled in.

Apparently this year we're experiencing a bumper crop of acorns and pine cones. Our yard is now liberally sprinkled with lots and lots of pine cones and acorns. Very little seed is being eaten from our bird feeders as all the critters who frequent them are off enjoying the natural fruits of the fall.

Yesterday afternoon, so many acorns were dropping, it sounded like the sky was falling. The acorns would ping off the roof, sounding like gunshot if you were sitting in the living room (we don't have an attic to muffle any of the sound). Out on the patio and under the gazebo, Skip and the pups were constantly assaulted by loud pings and bouncing cones and acorns. They so freaked out Ruby, who is prone to chickenshit-tishness, she eventually begged to go in the house!

Interesting Factoid About Comments

I noticed that I was on the verge of posting my 100th post (in fact, this is the 100th), and I was thinking about writing a milestone post. I started looking at the stats concerning number of users and how people came to the site (directly, via another site or through a search engine). For those who came via search engine, my posts about our modified Honda Element Xwav (aka the Toaster) and our Surehands lift system definitely generated the most visits. (Honestly, I'm not surprised about this because I searched the web about both of these items before purchasing to find independent reviews about them and was unsuccessful. I don't think there's that much out there about these aids.)

This caused me to wonder if anyone had posted a comment on any of my Caregiver Aids posts long after I'd posted the item. I checked them out and, lo and behold, there were comments that got posted months after the originals. I don't employ comment moderation nor did I have any kind of notification set up so I'd know when a comment was posted, so I'd never been aware of these comments until the other day.

This morning, I went to the Settings > Comments section of Blogger and found there's a setting that is almost exactly what I'd have requested if given my druthers. I'd have requested any comment posted to an entry more than 7 days after I posted it could be posted automatically but I'd get an email to alert me to it. All comments posted within the 7 days would just act as they do today, no notification to me, no moderation required from me. Since this wasn't available, I selected comment moderation only when a comment is more than 7 days older than the post. And, I'll also get an email notification about it. I'd rather not have the moderation in place, but the only other option would have had me get an email about every comment posted. This would result in enough emails that I'd probably miss notification about a comment on an older post.

I can't speak about any of the other blogging applications out there, but I must give kudos to Blogger for having this kind of functionality in place. I love comments and I'd love to know that an older post had a comment so I could read it and follow-up.

Sometimes I Worry

I wasn't much of a worrier in years gone by. I always had a pretty positive outlook on life and expected good things to happen. Unfortunately, while plenty of good things have happened and continue to do so, there's a lot of bad that's occurred in my life as well. Now, I am not so positive in my outlook ... sometimes I worry.

I worry what will happen to Skip if something happens to me. Of course, there's the big "something," that is, I die unexpectedly. I don't really worry about that much. After all, I've got life insurance to cover her financially. And, honestly, I won't be around to have to deal with the aftermath.

I worry more about smaller somethings. Primarily, if I get sick and end up incapacitated for a short while. Or if I lose my job. Essentially, I worry about situations where my ability to play the roles of primary caregiver and provider are impacted.

In these contexts, I worry most about an illness that sends me to the hospital that leaves Skip high and dry temporarily. I worry how Skip will handle this. Her resiliency has been affected over the years, and she has a hard time handling change. She's also intensely private. How will she be if I'm unable to care for her for a while and we need to get in others to take care of all the tasks of daily living? I know she'll deal with it because she'll have to, but it will be very hard for her.

I worry because we don't have an automatic "Plan B" to put into place if something does happen to me. Skip will be freaked out because of whatever's happened to me and won't be in a good position to figure out how to take care of herself. I know she won't want to talk about it, but she and I should put together a list of resources that can be called upon in a pinch ... friends, family, caregivers, church pastoral care. Then, there'll be a plan to set in motion if I'm down for the count for a bit.

I think we'll start that conversation tonight ... with Plan B documented, I'll worry less.

Hilary Lister

After I wrote my post recently about Roz Savage, Herrad from Access Denied, told me about Hilary Lister, another inspiring woman who has taken to the seas. Hilary is a quadriplegic who recently sailed around the British Isles in a series of short sails. You can find out more about her and read her blog at her website.

Apparently, Hilary was able-bodied and active as a youth. She was diagnosed with Reflex Sympathetic Dystrophy as a teenager. She is presently able to move only her head, eyes and mouth. She navigates her sailboat through three straws, using a sip and puff system to adjust sails and tiller.

I have never sailed myself, but whenever you see folks sailing on tv or in the movies, it seems to involve a lot of scrambling around the boat to "trim the sails," "swing the boom," steer and do all sorts of physical things. Envisioning someone who cannot move being able to take in all that is around her on the sea, understanding the wind to catch it in her sails and control her boat, getting safely from Point A to Point B, seems remarkable, to say the least.

Hilary says "when you live in a wheelchair or bed 24 hours a day, being in a sailboat is like flying." And, "sailing gives me a sense of freedom that I never thought would be possible again. Sailing quite literally saved my life."

Why did she set the goal of sailing around the Isles? On her site, her goals for the circumnavigation are stated as:

• Raise awareness for disabled sailing
• Show that disabled people can live exciting and challenging lives
• Challenge people to rethink their views on disability
• Encourage everyone to live their dreams
• Raise money for Hilary’s charity, ‘Hilary’s Dream Trust’

Roz Savage's path was inspiring to me in that she looked at her present state, asked if this was what she wanted in her life, and took action when her answer was "no."

Hilary inspires me in a different way. She is a woman who has managed to accomplish much in spite of the obvious physical challenges. In the world today, I think we write off disabled folks and don't expect them to contribute much to society. Hilary wants to shake up those perceptions, showing that you can achieve much despite physical limitations. Hilary says to me ... shake off those limiting beliefs you carry around in your head. Question your own assumptions about yourself and what you can accomplish.

My thanks to Herrad, an inspiring woman in her own right, for turning me on to Hilary Lister.

Do We Have to Get Divorced?

I'm sure this is a question heterosexual couples in the same situation have to ask as well. However, I'm particularly sensitive to it as 1) it's only been legal for same sex couples to marry in Massachusetts for just over 5 years, 2) we're only married in Massachusetts, not at the Federal level (talk about screwing up your tax situation), so we really don't reap all the benefits possible from our married status and 3) we're officially not married in most states in the US and most countries around the world.

This question came up because I started doing some digging into the health coverage that's available in Massachusetts for the disabled. Massachusetts is the only state in the US, to my knowledge, that requires every citizen to have health coverage, and they have a lot of state-sponsored options to help individuals get access to coverage. Anyone who is disabled can have coverage through a plan called CommonHealth.

I started looking into the provisions of CommonHealth last week to see if Skip should change to it. One amazing thing is, if you have CommonHealth, you're eligible for 40 hours of paid Personal Care Attendant services per week! Yippee! Visions of someone to help out with some of the "heavy lifting" danced through my head.

The plan seemed fairly complicated if you're eligible for Medicare. It was hard to tell what you needed to keep and it sounded like you needed to get drug coverage through Medicare Part D, which would be a viable option. But, nowhere could I get the details on premiums.

Yesterday, I finally found a highly legalistic, technical document that outlined premiums. Premiums are indexed relative to the "family unit's" household income in relation to the Federal Poverty Level. If your family's income is below the FPL, your coverage is free. The higher your income in relation to the FPL (an unbelievably low number), the higher your premium. So, if Skip counted only her income, CommonHealth would be close to free. Add me in and it rockets through the roof.

I need to get more details before I can truly understand how CommonHealth coverage works in coordination with Medicare. I spent 30 minutes on hold with the Massachusetts Health plan folks last week, never getting through to a live operator. I'll try again this week so I can speak with someone concerning how the plans work together and find out what the premiums really are.

This is a troubling quandary. I can understand the logic behind setting up premiums in a way that reflects ability to pay. But, with the stroke of a pen on a divorce decree, we could establish a different legal relationship that would dramatically change the income used to determine premiums. And, it would alter the legal protections we automatically receive (albeit only at the state level) due to our married status. (And, I'm just starting to get used to introducing Skip as my wife instead of my partner!)

I'm sure we won't get divorced, but I'm made crazy contemplating Skip's medical options and costs if we did. What a terrible dilemma for couples like us.

Up on the Roof

I was driving to my Weight Watchers meeting this morning, when my iPod served up Laura Nyro singing "Up on the Roof." It triggered a sweet memory and gave me a bit of a yearning for my own spot to run away to.

When this old world starts a getting me down
And people are just too much for me to face
I'll climb way up to the top of the stairs
And all my cares just drift right into space

On the roof, it's peaceful as can be
And there the world below don't bother me, no, no

So when I come home feeling tired and beat
I'll go up where the air is fresh and sweet
I'll get far away from the hustling crowd
And all the rat-race noise down in the street

On the roof, that's the only place I know
Look at the city, baby
Where you just have to wish to make it so
Let's go up on the roof

And at night the stars they put on a show for free
And, darling, you can share it all with me
That's what I said
Keep on telling you

That right smack dab in the middle of town
I found a paradise that's troubleproof
And if this old world starts a getting you down
There's room enough for two
Up on the roof...

As a teenager, I'd occasionally sneak out of the house at night and meet up with friends. One warm evening, I was out with two friends, David and Annie. It must have been 1 or 2 in the morning, and we were walking down the center of the street that ran by David's house. David was very much into music, so he had a radio with him. Laura Nyro's version of Up on the Roof came on, and we all sat down, there in the middle of the road, to listen. A wonderful and special moment. Bittersweet now as David and Annie are both dead. Annie hung herself about 25 years ago and David died of AIDS in the early 90s. They were both very special people.

And who wouldn't want a place at the top of the stairs where it's peaceful as can be and all your cares drift right into space?

Roz Savage

Have you heard of Roz Savage? I hadn't until the other day I saw in a list of CNN articles: "The woman who's rowing across the Pacific." That caught my attention and I checked it out. Which prompted me to visit her site, rozsavage.com. She's already crossed the Atlantic alone in a rowboat. Now, she's tackling the Pacific in three separate stages; stage two is almost complete.

She had been a management consultant in London and decided in her mid-thirties there had to be more to life than "four grey walls," as it says on her site. Apparently, per CNN, she wrote two obituaries at the time, one describing her life if she stayed on doing what she'd been doing and another as if she'd taken a jump and followed her dreams, doing what she'd always wanted to do. From there, she made a break with her old life and pursued adventure.

She ended up rowing because it achieved a number of objectives: it was environmentally friendly, solo (to test her capabilities without relying on someone else), challenging (so she could grow as a person), unusual (so she could make a living writing and talking about it) and physical.

Right now, on this leg, she's on day 104 at sea, has traveled more than 3,000 miles and rowed more than 1.2 million oar strokes.

I find her story inspiring. She had thoughts of "is this all there is to life?" She used those thoughts and her two obituaries as a way to trigger a new path. Obviously, the path she chose to find more meaning in her life was quite extreme, but I can learn from it to enhance my own life.

On the "Inspiration" page of her website, it recounts sample themes from her speaking engagements. To (almost) quote (for some reason, I couldn't highlight the text on her page to copy and paste here), she says:

• Make the connection between present action and future outcome. If you repeat the same actions 365 times, will you be where you want to be in a year's time?
• No matter how big your goal, you can get there if you make a plan and execute it with discipline, determination and dedication. One stroke at a time
• Don't waste mental energy asking yourself if you can do something. You won't know until you try. Just do it - you may surprise yourself.

I have plans for our future, but I can honestly say today's actions are not always consistent with achieving them. What I take from this is you can set big goals, even ones that might seem crazy from where you're sitting today. But, once you set those goals, you need to execute on them and make your actions every day help you achieve them.

Time to get a little crazy and start thinking "out of the box" I've got myself in. I need to start imagining all sorts of different futures to see which one is the one worth driving for. A purpose-driven life is a far more appealing life than the static, routinized one I find myself in today.

Why are Medical Facilities so Inaccessible?

Skip has asked me a few times to get our dentist appointments scheduled as our cleanings are overdue. (Skip does do most of the scheduling/phone calling, but I handle dentist appointments due to complexities with my work meeting calendar.) I keep not getting around to it, which we were both chalking up to my tendency to procrastinate. But I have now realized, when the need to call and make the appointment flitted through my brain, that I dread going, so I keep putting off the call.

I don't dread it for all the usual reasons one might dread the dentist, primarily the fear of pain. It's because it's so difficult to get Skip in and out of the dentist chair. There was a time when transferring from wheelchair to dentist chair wasn't too difficult, that is no longer the case. Skip's legs are completely dead and they don't even have much spasticity to help with standing. I don't do much transferring or lifting of Skip anymore and I suspect I'm not as strong as I once was as a result; and I'm out of practice. Plus, the dentist's work rooms are bloody small, so even getting the chair in a position from which to make the transfer is not an easy undertaking.

Unfortunately, this is not a unique situation when it comes to doctors' offices and other medical facilities. We've encountered ...

Gynecologists with examining tables that aren't height-adjustable. When you find a height-adjustable table, no one helps with the transferring or preparation for the exam. EKG tests administered on a high gurney with no one to help transfer a wheelchair user. Doctors' examining rooms with fixed tables that cannot be lowered, so Skip cannot be examined in them, but must remain in her chair for the appointment. Examining rooms that are so tiny a wheelchair, doctor and guest can't all fit. MRI machines that require you to lie on a long, narrow device with no handholds and only a helpful technician to help with a dangerous and dicey transfer.

Even if you call ahead to find out more about the setup and to ensure there will be help in transferring for the test, it's typical to find that the technician has not the slightest advance knowledge of the need for help and thus has to scrounge around for burly aides to help with transfers.

I could go on, but I'm sure everyone gets the point.

This situation makes my blood boil. I am not shy about providing pointed commentary concerning the absurdity of the situation when we encounter such barriers. But, I try to remember that the technician delivering the test or doctor giving the exam are not the individuals who determined the room's setup, so I don't get too cranky.

I'm currently at wit's end on this. We're now at the point of Skip's disability and my strength/transferring ability that some tests and examinations will no longer be possible.

Any good ideas on ways to find dentist offices that have relatively accessible work rooms? Unfortunately, if you look for handicapped accessible dentists on the internet, you find offices that are accessible purely from the perspective of building access, but not the finer points of the work room where the dentist does his/her work.

Way Back When

As I mentioned in yesterday's post about Facebook, we had dinner last night with an old friend of mine I hadn't seen in 30 years or so. Her parents are still alive and live in the town we both grew up in (where I still live); she was here visiting them this week.

She became a Mormon when she was 20. She married another one of my friends, who was brought up in a Mormon family. They moved to Salt Lake City, had a couple of kids, then her husband died about 20 years ago. She's lived in SLC as a single mom with kids ever since (one daughter is married with a baby, living near San Francisco, the other still lives at home with her mom).

So, we caught up on 30 years of history. We talked and talked and talked and were practically the last diners in the restaurant when we left at 10pm (way past my usual time out on a school night!).

One interesting thing I noticed during our conversation were some of the observations she had of me and my family from the time we were hanging around together back in the 70s.

My version of the early 70s: I started getting high on pot when I was 13, in 1969. I then proceeded to spend as much of my time high as possible for the next few years. I hung around with a group of about 10-12 people that a teacher in our high school dubbed "the Party People." I cut class, was regularly suspended, and eventually my parents sent me to boarding school for my last 2 years of high school in an attempt to get me back on track academically. Not surprisingly, my parents and I had a difficult relationship during this time, especially with my father. He and I had angry battles at the dinner table often (in memory, it seems like every night).

My friend's comments about that period: my parents were cool and very laid-back. I had a good relationship with them, the best of all her friends with their respective parents. She was impressed there was no tv in our house (the tv broke when I was about 9 and my parents didn't buy one again until I was in college).

I get along wonderfully with my parents now. I see them every two weeks (they live about 2 hours from here) for a social visit and to help with bill paying, balancing the check book and the like. They are wonderfully supportive of Skip's and my relationship. They are big fans of me, for which I feel quite lucky, especially where things were not so great between us in earlier years.

My friends comments got me to thinking about my relationship with my parents during my teens: was it really as bad as I remember? I suspect not. Sure, when I got suspended or got caught smoking dope, there'd be a confrontation about that, probably multiple confrontations. And, my father and I argued at dinner pretty regularly. But, I also remember lots of good times in our everyday lives. My father always had projects going and I often helped him out (especially when I was the last kid left at home, being the youngest with 2 siblings off at college). One weekend, he and I planted 2500 Christmas and fruit trees together (no, that is not a typo, it was 2500 seedlings). He had a huge garden and each July we'd have a big strawberry jam-making session with bread and butter pickle canning later in the summer. My parents were always welcoming to my friends who came to visit.

Interesting how an evening's conversation can supply new information and perspective to help shine a different light on one's personal history. The memories haven't changed, but my emphasis on one side of the story has shifted a bit as a result.

Old Friends

I joined Facebook in January or February of this year. I had always thought it was a tool focused more on the social needs of the young, so hadn't paid it much attention. Then I read an article on slate.com that went through all the reasons why you should join FB and effectively debunked all the preconceived notions I had about it. I thought then I'd give it a try.

Well, I'm glad I did join it. I have reconnected with old friends from high school and college as well as friends from even earlier in my youth. It's helped me find people whose whereabouts I did not know, so without a tool like FB, I'd probably never have found them.

It also gives an easy way to keep up with work colleagues I consider friends and friends from prior jobs. I found out an old friend had adopted a second child, saw baby pictures from a work colleague's new addition right away and got to see some nieces and nephews all grown up (that I haven't seen in person in a decade).

With MS in our lives, we have become increasingly isolated over the years. We're quite the homebodies and don't get out all that often. And, I must confess I'm not the best at keeping up my side of friendships. FB gives me some connections to friends, both old and new, that would be much harder to handle if done entirely by email, phone and in-person visits.

The best thing to come out of FB to date is a connection with a friends from my high school days whom I haven't seen in over 30 years. She lives in Salt Lake City now but is now back in Massachusetts to visit her parents and siblings who are still here in this area. (Did I mention before that I live in the house I grew up in, so I am still here, too!) Tonight, we are taking her out to dinner. I am so excited at the prospect of reconnecting with her!

"Pain is So Wearing"

Skip said this to me the other evening. It was a simple comment, but it helped drive home for me the impact of pain felt day in and day out. It just sucks the life out of you.

Skip's having some skin breakdown, probably prompted by an inability to use our regular cleaning routines in Maine on vacation and the recent hot, sticky weather we've had. We do have air conditioning, but Skip spends a good amount of time outside each day so is feeling the heat at times. We've had a wound nurse in to evaluate and have a game plan to correct the problem, but there's pain while everything is healing.

I am a bit worried about her skin. This is the worst breakdown she's experienced, and I know how easily skin problems can escalate into major problems. So, we're keeping a very close eye it.

But, the pain is the biggest concern I have now; the discomfort she feels pretty much all the time. I can't fix it. I can keep her skin clean and apply salves and give her Tylenol, but that's it. It's frustrating that there's nothing more I can do. It creates a helpless feeling for me that's different from dealing with the losses of physical capability. For those, I've been able to apply problem-solving capabilities to figure out how to manage the new reality. Here, all I want to do is stop the pain, but with very limited success.

Do others feel that pain is a different animal from other MS issues?

Care: Maintenance vs. Enhancement

I've been thinking about this post and what I'd say here off and on all week. In fact, that's why I haven't posted since the 10th, because I'm trying to figure out what to say on this particular subject.

At first, I was going to write about the need for the caregiver to care for herself. But, if you've ever prowled around any web sites about caregiving or read any books about it, they all touch on this subject and I don't have anything new to say about it. In fact, I recently read a book on caregiving, A Family Caregiver Speaks Up, and Suzanne Mintz, the author, had an unbelievably dead-on comment about why caregivers need to take care of themselves that pretty much says it all from my perspective:

Your own good health must be preserved if you are going to go the distance as a family caregiver. Your own good health is the best present you can give your loved one, and yourself.

Unfortunately, I'm not so hot at taking care of myself. I'm 53, deeply entrenched in middle age, and I've got some of my own health issues to deal with. But, I try to ignore them as best I can. Honestly, though, this isn't because I'm a caregiver to Skip and don't have time for myself. I've never been much for taking care of myself, as in eating healfully, getting plenty of exercise and the like.

This brings us to the title of this post: maintenance vs. enhancement. Right now, I'm maintaining my own self and maintaining Skip's physical self. I take care of her medications, help with all the tasks of daily living (you know the drill), prepare meals, and so on. I do all these for myself as well. But, neither of us is looking at improving or enhancing our physical beings.

This is where we need to take action. We need to move from just maintenance into enhancement. Unfortunately, change is hard. And Skip is not an embracer of change. She says with great frequency, "I hate change," and means it. Change has not been her friend, after all, since it usually means some other MS loss. She won't resist change, though, if I push for it.

What would I like to change in order to enhance our lives? I'd say the two key items are: healthy eating and exercise.

All my life I've been fat (this is a descriptive word, not an epithet, in my dictionary). As a kid, my parents tried to get me to lose weight, but always without success. When I was in high school, they stopped trying (at the request of a counselor I had at the time). In college, I began reading about the fat liberation movement (this was in the mid-70s, when there were many movements afoot), and began to look at size discrimination as an issue of society rather than an issue of my size. I didn't believe I needed to change, society needed to learn to accept me.

Well, this was all well and good until I started to get older and realized that I was using fat acceptance as license for me to ignore the need for healthy living. Something triggered inside me, though I'm not sure what. The pain of staying the same suddenly got worse than the pain of making changes. With a friend, I joined Weight Watchers, completely changed my eating habits, began exercising and, over the course of 2 years, dropped 100 pounds. Unfortunately, I've gained 2/3rds back.

So, how to trigger change? How to shake myself out of my settled-in ways and embrace new habits? This is my current struggle, and, as yet, I don't have any answers.

Another Lovely Early Evening

I don't know if this happens to you, but when I plan to recreate a wonderful time that happened spontaneously, it often doesn't work out as well. Fortunately, recreating our Friday early evening on Sunday evening worked out just beautifully.

Skip has a new physical therapist, who was coming at 4pm on Sunday to show us some range of motion exercises for Skip's shoulders. I suggested we head out to the patio as soon as she was done. Skip thought it was a great idea.

It was another unseasonably cool day here yesterday, so perfect for sitting outside. In fact, we kept the doors open all day and the a/c never came on as the outside temps were so low (70ish F).

We got outside around 5, Skip had a few cigars (small ones), the pups lazed at our feet on their big bed and I read aloud from Harold Kushner's book. Around 7, we all trooped back in the house and I made a simple dinner of grilled chicken thighs, garlic ciabatta bread and salad.

Great conclusion to a wonderful weekend.