Mom, Dad, and Doctors

That’s such a cute baby photo of little Marion crawling on hands and… one knee and one foot.  Huh?  Oh - her hip hasn’t grown in properly.  Let’s pin the hip, says the doctor, to let her grow up OK.  OK, says Mom.  No!  says Dad - I knew a girl in grade school who had her hip pinned, and she was a cripple as a result… let’s ask for a second opinion.  Thank goodness - the new doctor told my parents to make me sleep in a brace, to learn to ride a bike ASAP, and to make sure I always wore solid shoes… and 65 years later my hip is fine.

Marion’s still wetting her bed - and she’s 8!  Luckily, Dad’s a master hypnotist. It takes him two tries to get it right, but after that I never wet my bed again.  Let’s celebrate! says Mom, and buys me a fuzzy pink wool blanket, a feather pillow, and a feather comforter…. and I starting waking up too sick to go to school.  I’m fine after an hour, and ready to go… but there’s no way to get to school after the bus has gone by.  Mom takes me to the doctor, who announces, “Any illness this child ever has will be psychogenic” - a diagnosis Mom quickly shares with me.  “Can we have this child tested for allergies?” asks Dad… and sure enough: wool and fur, among many other things, set me off.  Take away the fancy bedding, and I’m back to school.

I’m in college, and my left shoulder is sore.  Why?  Looking back, it’s probably my crummy student posture, but Mom’s feeling guilty because of the car accident she caused, that hit my shoulder badly… so she starts taking me to doctors.  Nobody suggests physical therapy.  One announces that I have osteoarthritis in that shoulder, and the only solution is to remove my entire audioclavicular joint… Dad & Mom are separated at this point, and I’m in Mom’s hands, so I have the surgery… and have been in pain ever since.

There are other stories… the arthritic big toes, the broken little toe, the Lisfranc injury, Lyme treatments… now it’s the latest MS medication.  Mom & Dad are gone, so it’s up to me and my neuro… and she wants me to switch from Copaxone to Ocrevus.  It sounds like overkill.  It sounds like I’m putting myself in greater danger from side effects than I am staying on Copaxone.

Do I have the courage to say No?

Frustration

I’m bored. What can I do?

Well, I could clean up the yard & work in the garden… OK, that’s out: I fall over when I work in the garden, and walking around the yard wipes out my legs.

I could work on some music… OK, when I warm up, I generally use up all my spoons half-way through, and don’t have anything left to work on music - so that’s out.

I could lie in the sun on the deck… on what? Even if I still had that old chaise lounge, I wouldn’t be able to get it down the stairs onto the deck — heck, I can barely get myself down the stairs onto the deck… so that’s out.

I could read a book, or a magazine, or a newspaper… but when I read more than a page, my eyes cross and I’m too exhausted to continue… so that’s out.

I could write about my frustration… but my eyes are crossing. Back to the old stand-by: go to bed, listen to a book on Audible.

If you want something done right...

...do it yourself.

But if you can't do it, how can it get done right?

Follow your dream

That's the advice we all get: Do what you love, and enjoy your life! Surround yourself with people you love, and your life will be joyous!

If you can't do what you love to do... if you can't trust yourself to love anyone... what kind of dream can you follow?

OK, get a grip... What did you do when you were a kid? You spent all your time reading. So now you spend lots of time listening to books... you're still the same person...

What is this thing called "love"?

I brought up postpartum depression and my anger at my mother with the therapist I've been seeing since my job loss sent my depression back into the aptosis range.  And she said, smiling,
"But you loved your mother anyway, right?" 

And I said, "No."
=========

NPR just ran a story on postpartum depression... and I wondered.  I was told a long time ago (when? by my brother?  or my father?) that there was a nurse to take care of me after I was born, because my mother had postpartum depression.  

Is this the cause of my own problems?  No bonding.  Attachment troubles.

http://www.helpguide.org/mental/eqa_attachment_bond.htm
points out:

"Insecurity can be a significant problem in our lives, and it takes root when an infant’s attachment bond fails to provide the child with sufficient structure, recognition, understanding, safety, and mutual accord. These insecurities may lead us to...
...Tune out and turn off—If our parent is unavailable and self-absorbed, we may — as children — get lost in our own inner world, avoiding any close, emotional connections. As adults, we may become physically and emotionally distant in relationships."

This is exactly how my life has run!  This is why, although I have great joy with my Friend, and miss him when he's gone, I don't dare say I love him.

======

I spent my childhood forgiving my mother, saying "She's doing the best she can." <http://www.livescience.com/17573-baby-mother-bonds-affect-future-adult-relationships-study-finds.html>  When she finally died I rejoiced, thinking "I don't have to forgive her any more - she's gone, and won't know what I'm doing or saying!  I can be as angry as I need to be!"

-- So I can be angry that she ran over and killed my cat while dragging me to that Girl Scout meeting - and tossed the body in the garbage can.

-- I can be angry about the bedroom remake that blew away everything I cared about... sending me into a fugue state that lasted years.

-- I can be angry that she bought herself a cheap wire music stand for her post-retirement recorder lessons, after refusing to buy me a cheap stand when I was a kid taking violin lessons.

-- I can be angry about the time she insisted on my "teaching" her Sunday School class a melody that I didn't know and couldn't read... one of my most embarrassing memories.

But anger isn't healthy.  And the 5th commandment says I'm supposed to honor my mother.  

So... how do I get past this at last?

Leaking optimism

My optimism is leaking away.  What's causing the leak?  How can I fix it?

They gave me my MS DX back in 1988 (after more than a decade of little symptoms) - and Life went on.

I directed operettas and plays.  I performed.  When performing and directing got harder, I focused on organizing concerts (something I'd already been doing anyway). I taught singing.  I ran an opera workshop.  I edited a newsletter (and was the most powerful force in the organization for years).  I led the music for High Holy Days services. I moved to a different temple, where I finally achieved an adult Bat Mitzvah and sometimes lead Saturday AM services.  Whenever I hit a new limit, I found a new path - and Life went on. 

I'd gotten married before my DX... well, everyone should try it, I guess.  My husband moved out when my legs got bad... well, I've always preferred living alone. I found a boyfriend... this is perfect for both of us: we each have our privacy, but we have someone to turn to.  My relationships are not the cause of my leaking optimism.

I saw early on that I needed more money - so I temped.  I took a full-time job for a while. I worked in an office.  I saw that I needed more rest and less travel, so I worked from home.  I learned new skills, and spent ten years in a career (web design) that didn't exist when I went to college, in a job I loved.

My job ended... what's next?  My doctor talked me into applying for disability... and my optimism started leaking away.

I fell two years ago, and broke my foot.  I slipped last year and cracked my ribs.  My neurologist sent me to a physical therapist, who tells me to do less, move more slowly, and take naps.  "How old are you?"  she says.  "You're 62?  Stop trying to do so much!  Even people your age without MS need more rest!  You're old!" ... and my optimism keeps leaking away.

What positives can I take from my doctors' pin-pricks, that will leave me with some hope?

Disability:  SSDI is paying something... even if finding a new telecommuting job within their limits is hard.  And my former employer's disability program is paying for my health insurance... even if they're making it impossible for me to pursue the career I'd loved for ten years.  So I still have insurance, and a place to live, and food... Keep looking for Life!

Old age:  Are you kidding?  62 is young - I know people in their 80s and 90s who are actively exploring new lives.  Well... maybe if I take more naps, I can still explore Life.

There's a lot I can do on-line.  Here I am, writing a blog post... I'll get back to Facebook soon to see what my friends are doing.  Then I'll check my email to see if anyone has replied yet to my invitation to this year's seder.  And I'll go back to the on-line job boards to see what part-time/flex-time/telecommuting are out there today.

I'll find a band-aid for that leaking optimism, and it will heal.

...something worth living for...

Going to the party was a good idea.

I got to hear a lot of talented, energetic people performing pretty well. A few of them performed excellently.

Some of them performed pieces I used to perform. Most of them performed in the energetic, exuberant, expressive manner that used to be mine.

I used to be a very good performer.

I didn't sing at the party.

If I slit my wrists tonight, how long would it take for anyone to notice?

• Nobody expects to see me tomorrow.
• Jim's birthday is Monday, but there's no reason for him to come over.
• Nobody expects to see me Tuesday.
• Gisela's next lesson is Wednesday at 12:45.

It would be cruel to leave Kitara without food, and disgusting to leave her to eat my body... I'd have to put her out.

It would be cruel to make Gisela find me.

I need to find something to keep me busy.

I need to find something worth living for.

Stair lift

I don't want to be an inspiration.

I don't want to be a good example.

I don't want to be amazing for getting enough donations in barely more than a week to be able to afford a stair lift.

I WANT MY LEGS BACK.

I WANT MY JOB BACK.

I WANT MY VOICE BACK.

I WANT MY LIFE BACK.

COBRA and Crosby

Crosby claim:

I started telling you as soon as I found out last week, and have told you repeatedly since, that my COBRA account is ending tomorrow (November 30, 2013). I've told you repeatedly to STOP AUTOMATICALLY WITHDRAWING PAYMENTS FROM MY PRIVATE BANK ACCOUNT!

But I just received a letter from you stating that, as of 11/30/13, you are raising my monthly premium rates to $109.83.

If you withdraw $109.83 from my private account in December, 2013, I will hire a lawyer and sue Crosby, not merely for $109.83, but for $10,983.00, for emotional pain and suffering.

I know that "health professionals" make their livings off of sick people, so you increase our stress to make sure we stay sick... I just hope YOU get to experience this stress one day. AND I HOPE YOU SUFFER!

Handicap restroom stalls

This started as a theme about handicap parking spots, to which I added:

---

On a similar topic:

The handicap stalls in the rest room are for handicapped people. They are extra-large to leave room for scooters, wheelchairs, and walkers. They feature hand-rails so people with difficulty standing can safely sit and rise.

They are not extra-large so you have extra room to try on the dress you're considering - that's what the dressing room is for.

They often have sinks so handicapped people (who may be subject to embarrassing accidents) can clean themselves privately - not so that you can fix your makeup in private.

The seats are not high so that you can "feel like a queen" (yes, that's what I heard a non-handicapped gal use as her excuse for using the stall). They're not high to suit your long legs (your legs aren't that long!). They are higher than normal to make it possible for the handicapped to "transfer" (the medical term) from a transport device.

If you are using the handicap stall, and you're not handicapped, remember: as a result there may be a handicapped person in serious need, who may be less able than you are to "hold it".

Mind if I pee in your shoes?

---

Lisa (who I know has MS) replied:

Sorry, Marion, but I beg to differ.

There are no laws which limit the use of handicap stalls. There are laws regarding the use of handicap parking. I don't see why handicap stalls should remain unused "just in case".

---

To which I returned:

Lisa, I guess you don't have the standard MS bladder. (I know other handicaps that require similar support.)

If you'd ever risked heading home instead of waiting for the toilet, started peeing uncontrollably before you even opened your front door, peed down the hall to the bathroom (soaking your clothes from the waist down - including your shoes), dragged yourself barefoot and wrapped in a towel to your bedroom to find something dry to put on, threw yourself on the bed in total exhaustion, realizing that when you've recovered (in an hour or so, if you're lucky), you'd still have to wash the pee off the floor (in spite of usually having to hire a cleaner because you can't stand long enough to wash the floor)... and then burst into tears when you remembered that the front door was still wide open (with the key still in the lock)...

... maybe then you'd understand why disabled people need priority access to handicap stalls.

End-of-job/start-of-disability phone calls

On phone with the on-line pharmacy:
- (Me) My FSA will no longer be valid starting December 1, so is there a way I can receive and pay for my December shipment in November, so the co-pay will be covered by my FSA?

- (Me, in response to her question) No, I'm no longer an employee there. I've been on COBRA since July.

Many delays; finally forwarded to the COBRA expert - Surprise! A helpful person:

- (Her): Oh - so you're going on vacation in December (wink wink), so we'll send you the medication for December in November. Have a good vacation! Remember to pack enough clothes!

Meanwhile, I've learned not to assume that the people I'm talking with know what they're doing.

On the phone with the benefits folks:
- (Me): Please stop withdrawing money from my personal account to fund my FSA, because it's ending on 12/1
- (Her): My records say your FSA is ending on December 31.
- (Me): Really? How lovely! But could you please double-check? The Disability Officer told me yesterday that the FSA will no longer be valid as of 12/1. Are there any really new records that you may have missed?
- (Her, after some time on hold) Oh, you're right: your FSA will end as of 12/1.

... is that the end? No, I can't just phone and pull out of the automatic withdrawal... email first, and see what they'll demand next (and will they fix this before December 1?!)

Awards

I checked my 2012 SS report: The amount SSD is promising me is in line with the raise I got before MIT laid me off, so there's no reason to visit the SS office. The amount they've promised is the right amount.

So I phoned Prudential (MIT's Longterm Disability Program's agency) to tell them the amount, as they'd requested.

Thanks, the guy said. We'll need that figure, because we'll be reducing the amount we give you by the amount covered by SSD. [he tried to put it in a much more politic manner and got tangled, but that was the gist] Yes, you probably want to know: You've been accepted for the MIT program.

Can you work at all while receiving benefits? I'm not sure... hmm... I don't think so, but you should talk to people at MIT to be sure.

Is there anything else I can help you with today?

poison? razor?

Accelerated Cure Project volunteer spotlight

Lindsey of the ACP asked me if I'd be willing to be featured in their newsletter. Sure, I said, and wrote up a story answering the questions she asked. It was long... she'll trim it... but here's the original version I sent.

She asked:

• When did you first get involved with ACP, and why?
• Why did you decide to start Music to Cure MS? (describe a little of Music to Cure MS history and where it is today)
• What do you do to stay positive and motivated?
• Why would you recommend ACP as an organization to be involved with and volunteer at?

My answer:


I first heard about ACP in 2002, not long after it was incorporated (when it was still called The Boston Cure Project), and was intrigued: its goals and plans made so much sense! This was the most positive, active MS-related project I had run across. I wanted to do whatever I could to help.

I had studied music on a professional level, planning to perform opera. My MS diagnosis in 1988 made it clear to me that all the little problems and limitations which had been holding me back for decades were not going away - so it was time to find a new goal. Luckily, I already had experience as a stage director for opera and Gilbert & Sullivan, and it was easy to transition to a life as a stage director, concert organizer, and occasional concert soloist.

By the time I became aware of the ACP, the long hours required for directing were becoming too much for my MS-limited stamina - so it was time to find yet another goal. My desire to help the ACP looked like a good place to start.
I began contacting singers I'd worked with, seeking advice on creating a concert to benefit an organization fighting MS. The responses I got were not, "Is it worth the effort?", but, "When is it happening? What can I sing? How else can I help?"

As I've repeatedly found since starting this annual concert, mentioning MS to performers, audience members, sponsors, or others typically results in some people telling of friends or relatives with MS, and others admitting that they have it themselves. I visit local shops in the month before each concert, offering opportunities to publicize their businesses while supporting a nonprofit working for a worthy cause, and I find myself listening to stories of MS told by business owners who are eager to support us... while performers (including Barbara Quintiliani, the internationally-renowned soprano who performs in spite of her own MS) tell me their own stories. This is a key cause!

The first concert was held in October of 2003 in Arlington, MA. Our performance roster included over 20 solo and/or ensemble singers, three pianists, a 70+ voice children's’ choir, and a conductor. Our roster has shrunk to a more manageable size, but the concert keeps going. Every year I question whether it's worth doing again... and every year it's clear that everyone involved is looking forward to the next one.

We've never raised huge amounts. We've never enjoyed the overflowing audiences my performers deserve. But the concert is continuing, and always gaining new help.

Read about my first ideas in Boston Singers Resource: http://www.bostonsingersresource.org/resources/bsr-spotlights/marion-leeds-carroll/ and then see how the concert has grown over the years: http://singtocurems.org

You ask, what would your advice be for people newly diagnosed with MS?

• MS is different for everyone, and it changes for each MSer as the years go by. Enjoy what you have, don't mourn for what you've lost, and keep looking for the next good thing in your life.

You ask, what do you do to stay positive and motivated?

• I've fought depression all my life, since long before my dx. I often remind myself what I said when I was 19: "I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive." That's one thought that usually gets me over the worst spots. The second: making sure I have positive, happy people near me, doing positive activities, to keep me upbeat. Also essential: admitting my need for rest and solitude. (A friend shared this helpful Dilbert cartoon with me a couple of years ago: http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg)

You ask, why would you recommend ACP as an organization to be involved with and volunteer at?

• I'm tired of fundraising letters, calls and emails from organizations asking me to help them help MS sufferers. (Hello? I have MS myself, and rather than doing something for me, you're asking me to give you money? How can I be sure you're really supporting anyone besides your own paid staff?)

The ACP, on the other hand, doesn't claim to help individuals with MS. It sets out to support researchers as they ask hard questions, find good answers, and share their new knowledge, growing the data base the ACP set up and continues to build. (And we know the ACP, far from enriching itself on the project, is mostly led by volunteers.)

MS is incurable, progressive, and disabling, and we still don't really know what causes it. The ACP is focussed on solving problems that will help us all in the long run.

A MyMS Team member asked:

Does anyone here go to a counselor for assistance in dealing with MS and life? I am struggling to get through my day and wanted to know if anyone else goes to counseling to assist with MS and life/work balance?

============
I answered:

I've seen various therapists over the years, mosty for depression (even before I got my dx in 1988)

- some have been excellent help, allowing me to talk out my worries & giving me clear-headed advice and encouragement
- one got it totally wrong, spending our time listening to me and "topping" me with her personal solutions to her own problems
- a few have tried to talk me into antidepressants (not for me! - psychotropic meds always cause problems for me; some neurologists have tricked me into them, with bad results.)

A strange episode a few years ago changed everything: I started burting into tears for no apparent reason. I went to a therapist, desperate for help. I burst into tears in front of her, she asked me why I was crying, & I said "I don't know!"

My neuro finally found the answer: Psudobulbar affect. I cry when I turn my head in a particular direction, at a particular angle; I cry (instead of laughing) when something strikes me as funny; if I'm tired, I cry at anything slightly sad... This is an MS symptom, not an emotional problem: I'm not in complete control of the expressions of emotions, and give an appearance of reacting in inappropriate ways, EVEN IF THE REACTION HAS NOTHING TO DO WITH MY TRUE FEELINGS!

Realizing this was actually freeing: I no longer need to try to analyze things and figure out what childhood trauma caused my reaction. I'm free to live in the moment, and deal with problems as they come up.

It's frustrating in many ways: If I go to a funny show, I have to hide my face to keep people from seeing my sudden tears (trying not to sob out loud). I used to sing opera, but there are songs I can no longer sing because they make me burst into tears. I've embarrassed myself in public, trying to sing, losing control, and having to stop.

I'm going through a really bad period in my life (lost my job; PC pushing me into applying for disability; SSDI approving me at first try, but not giving me anything in writing) - so I looked for help this summer, and could not find a therapist to connect with.

In the end I've had to depend on myself and my friends to keep me going. I keep going back to my koan from decades ago: I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive... so I'll stay alive.

Patient Talk Blog guest post

Check out my guest blog post about last week's excitement - and plans for a better week ahead.

Government shut-down 2013

I have a dear friend who proudly declares herself not merely a Republican, but a Libertarian.

When I tried to point out (the last time I dared discuss politics with her) that some of us, having truly done all we can for ourselves, find that we *need* the governmental "safety net" set up by our fathers, she smiled and assured me that she, personally, would always take care of me.

The horrible degradation involved in turning, hat in hand, to a wealthy friend and praying for crumbs has obviously never occurred to her. In the Bible, it's expected that poor people will sell themselves into slavery; it's expected that the wealthy will leave the edges of their fields unharvested so the poor can glean... but we're also urged to set up systems so that the poor and the sick will be supported without embarrassment . That's what our fathers did - and that's what her co-party-members are seeking to destroy.

Perhaps she feels it's more warm-and-fuzzy to be protected by a friend, rather than supported by a cold bureaucracy. Sure! - but friends have their own lives, and aren't always there for the needy. My friend is about to move out of state. Can I still ask her for help?

It usually takes repeated tries to be accepted to SSDI. I was accepted immediately, with the ruling, based on my history, that I have actually been eligible since the year 2000. I've really done all I can! - but my doctor thinks I should be on Disability, and SS clearly agrees. I'm scheduled to go on SSDI in November... if SS is back by then.

My fuel provider, hearing of my lost job and impending SSDI coverage, urged me to apply for Fuel Assistance. From what I can see, I've been qualified for assistance for over a decade, so I should have no trouble receiving help - if the DHCD has any funds to release this winter.

Shall I ask my friend to pay my fuel bills this winter? How about my health insurance - will she pay the $4,751 per month for my basic medication, as well as my regular specialist check-ups?

Or must I glean from the edges of strangers' fields?

Good life with MS?

MyMs Team question:
So we all know that MS sucks, but is there anything good that it brought into your life?

========

My answer:

I had been putting off activities I needed for Life, but when I got my dx, I said, I'd better do all I can do before I become too disabled to do anything!

So I had a decade of performing, directing, editing a newsletter... all at a Community Theater level instead of the professional level I'd been hoping for... but it was good.

Then, when Life changed (disability revved up, husband walked out), I had a decade of using new on-line skills (building web pages professionally, using on-line graphics programs...) while continuing musical activities in a different manner (teaching singing, organizing concerts to benefit the Accelerated Cure Projec for Multiple Sclerosis - see singtocurems.org for details), and building a new relationship with a lonely co-worker... and it was good.

Then Life changed again: They laid me off from my job, and my doctor pushed me into applying for Disability. This has been horribly painful... but I keep finding work to do and people who need and want me. So - I have hope: The next part of my life will also turn out to be good.

Revenge

J comments about an email he received from the web list, looking for someone to build a simple site. "Oh, the Libraries web group?" I ask. "I'm not on that list any more." "No," he says, "not the Libraries list - it's a general U. list - I thought you were on it."

I spend a lot of time imagining sending an email to the unhelpful HRO who never mentioned any such list through all the months I begged her for help as my job slid down the drain. It has lots of words like "bitch" and "evil," and points out that, even though she has twisted things and backed me into a corner so that I can't sue my ex-employer for disability discrimination, I don't see why I can't sue her personally. I get very angry, and feel very bitter and depressed. I pray that she will suffer someday (soon!), as I have, thus becoming capable of appreciating the harm she has done me - the loss not simply of my job, but of the dregs of my health.

And then it hits me: She can't be hurt by anything I say to her. She will keep her job for as long as it suits them to let her keep it, and my feelings will make no difference to her life.

But I can be hurt by what I'm saying and thinking. I'm wasting my limited time and energy on negative thoughts and words, instead of helping others and myself, and building happy memories, plans, and hopes.

So I go out on my scooter, in the sun.

Circumlocution office

She phoned last Thursday, requested info I had already provided, & asked if I'd be in for the rest of the day - because, she said, she'd be phoning me with more questions.

So I stayed in all day. She never called. That was last Thursday... and she has never called again.

So I checked their web site (useless), & then called their office. My extimated wait time was 50 min - would I like to request a "call-back" when someone was available? Well, OK...

An hour later, I got a call from a non-native-English-speaker: I have to call a different number, and speak with (uncertain name - female, he insisted - but he clearly didn't undertand it himself). And of course, the office at that number closed early...

So I phoned today. And was put on hold for 15 minutes, while the friendly receptionist tried to sort out the answers... After a struggle, I got the right name (it was a man's name, not a woman's - in fact, when I pried it out of her, I recognized him as someone I'd spoken with in person 4 months ago)

Answers?
- The decision will come in "a couple of weeks"
- The mistake in their records can't be addressed until they've made the decision

Circumlocution office.

Seeking the source
of the pain,
I move my tongue, and find the tooth.

If we want that, she's the one to
I always turn to her if
We can depend on

she knows how it should
she can fix

You can depend

...I don't have the strength for
That takes more stamina than