Use power for good

$50,000 is a lot of money to us; for big corporations, it’s only a drop or less.

I feel like I'm getting first-hand experience that I can share with my peers as they age.

OH and I cheer each other up by telling ourselves that we are "going first," testing the water.

Have to be concerned about falling?  I'm already there.

Need to walk with a walker? I already do. Use a wheelchair? Yep.  [And friends that are arranging to borrow loaners for me are getting experience too!]

Get a disabled placard? I got it [And even though I am not driving anymore, I still use it when going out with friends.]

Buy and wear disposable underwear? I've got experience.

Use a pill container? (That's for you, J!) Sure.

I talked to a caller recently about his frustration with the hospital billing him instead of his health insurance company because they didn't want to "deal with the company" anymore.  [Sadly, I have experience with this, too.]

I'm guessing the caller would prefer not to "deal" with either of them either!   This seems so childish to me.

I look at this situation and am disgusted.  We are sick. We can't spend our limited energy to mediate hurt feelings between the hospital and the insurance company.

$50,000 is a lot of money to us; for big corporations, it's only a drop or less.

I think the majority of us would like to honor our debts [if they are, in fact, our debts, not the hospital's bloated idea of place to start negotiating] but maybe just not in the time frame when they want it.

Don't even get me started on the costs we have to bear for the expensive medications that may or may not even be working!  There is still no way to test for that; we can only wait and see.

And when you are just trying to do your best, make ends meet, and hang on until the next day when hopefully it will be better, petty squabbling between big corporations seems so pathetic.

I wish I could slap them and say "Grow up!"  

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My life’s quality

In the 1999 movie The Bone Collector, Denzel Washington played a quadriplegic crime scene investigator. As I become more disabled, I have become interested in this story line.

Quality of life is tied to perception of ‘meaning’.

The quest for meaning is central to the human condition,

and we are brought in touch with a sense of meaning

when we reflect on that which we have created,

loved, believed in or left as a legacy.

–Viktor E. Frankl ‘Man’s Search for Meaning.’ New York: Pocket Books, 1963.*

I talked to another MSer a few days ago, and she told me that she’d only been diagnosed a few years but that she had decided that if the disease progressed to a certain point (she didn’t say what point), she’d arrange for assisted-suicide, that she didn’t think she’d have any quality of life left.

Wow.

I’ve said it before and I’ll say it again: this disease SUCKS!!!  No argument there.

I’m 20+ years on with it, have an embarrassing lack of bladder control, deficient vision and very little strength or energy most days.

I can’t walk without some kind of support now (does the wall count as support in your house?), have walkers on both floors of our two-story house, and (horror of horrors) use a wheelchair when others take me out, an electric scooter when I do it myself.

I can still get myself up and down the stairs, sandwiched between the hand-rail and the wall, but I can’t do it more than once or twice day, usually down for dinner and TV at night, sometimes for coffee in the morning, but sometimes not.

But I’d never describe my life as lacking quality. 

Yes, there was a time when I was first diagnosed that I kept an old, scuffed up pair of high-top sneakers to wear when I became confined to a wheelchair so that others would know I used to walk.  After a few years, seeing no progression, I threw them away.

I remembered seeing the 1999 movie The Bone Collector with Denzel Washington as quadriplegic crime scene investigator and noting at the time that it was based on a mystery novel. In the movie, his injury was prior to the story, a tragic recent development on the job.

I have become interested in this story line: that how you think about things is unique to you, and transcends your physical body.  That your life can still have quality regardless of whether your body works, or even IF it works.

I wanted to read this book, which turned out to be a series.  In my online paperback swap, I requested the first book. I’m about halfway through it now and am hooked by the premise.  I look forward to getting to know these characters.

Now I’m wondering what kind of author happens onto this premise WITHOUT first-hand experience?  Hmmm: this calls for more research…

——-

*I copied this quote from another website but couldn’t find it for myself in the book, so I cannot be 100% sure of it.  However, I can and do whole-heartedly recommend the book Man’s Search for Meaning.

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A tale of two (MS) pathologies

A friend recently forwarded me an article from the Inside Stanford Medicine newsletter. It seems that a small, recent study showed that there may be two different schemas for MS. 

So MSers’ responsiveness to the available therapies, and interferons in particular, might depend on which pattern of MS we have.

This totally fits with my experience: my disease has never seemed to be halted by the meds, or even overpowered temporarily by steroids.  Even chemotherapy didn’t seem to have any effect.

And when my neurologist told me that in his opinion I had transitioned to secondary-progressive, I thought “Well, duh?!  I’ve been thinking that for several years now!”

In fact, this study may be suggesting that I’ve been progressing since day one, that although my diagnosis was Relapsing-Remitting Multiple Sclerosis (RRMS), it may actually have been some progressive form all along.

In truth, once getting this diagnosis 20 years ago, I suspected that doctors often gave the diagnosis as RRMS then they could prescribe one of the first-line drugs for MS that are only approved for this type.

MS medication is so expensive and has required self-administered, regular shots, sometimes as often as every day.

This study seems to confirm for me that giving myself the regular, sometimes painful, shots did nothing to slow the progression of my disease.

And that’s the mystery for all of us: there is yet no way to measure the effects of any of our medicines.  I have no way to measure this, so I only have my gut feeling.

My doctor agreed that the latest medication I was administering faithfully had obviously not impeded my progression, so we agreed that I should stop.

The silver lining is “Yay, no more shots!” 

On the other hand, “Whoa, no more shots. Of any kind.”

He explained to me that prevailing theory at the moment is that MSers who transition from RR to SP eventually reach a plateau and that we can hope that I’ve already reached it.

He did arrange for me to try a new oral drug for MS, A——-, which helps some of the affected walk more confidently.  I’ve been taking it for two months now but have experienced no change.

If the results are replicated by other labs and larger studies, MSers may someday be able to take a blood test at diagnosis to see which type they have.

It’s another small piece of the puzzle.

Related links

Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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My MS activist moment

I recently proposed a blog posting questioning the practice of ‘flagging’ law school applicants who had requested ADA accommodations for the LSAT. I am an MS Activist.

I have been catching up on the pile of magazine back issues that keeps growing, and then recycling them.  I only mention this because I just read a Momentum article from 2009 about ‘flagging’ law school applicants who had asked for ADA accommodation for the LSAT.

[Digression: Momentum is the magazine of the National Multiple Sclerosis Society.]

When I brought this to the attention of a co-worker, she urged me to propose a blog entry on the practice to FindLaw.  So I did.

Related links

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Turns out, not every MSer is my peep

A few weeks ago I took a call on the MSFriends (MSF) helpline from a “C___” in [state deleted] who was just calling to talk.  She was suffering from a migraine because she wasn’t able to take any pain medicine preemptively before she had driven herself to the appointment for her annual MRI and back home.

I started to respond sympathetically to her story when she suddenly had to ring off so she could answer her other line.  She apologized and hung up.

Now, in addition to the MSers I meet doing my volunteer work with MSF, I have long been a member of PatientsLikeMe (PLM), a website where MSers, or individuals with other chronic conditions, can create an account, pick a screen name, and start using tools to record and share symptoms and anecdotes with other MSers.

On this particular night I was reading the different message boards on the PLM website when all of a sudden I read the exact same story I had just heard by a user named C___ in [state deleted]! I have come to value other MSers helping each other wherever we connect up and thus was so excited to discover another way to reach out to her. 

So, maybe over-zealously, I sent her a Private Message (PM) telling her that although I had just been “lurking” (meaning hanging out but not posting much–or at all–in internet forum talk) in the forums, I recognized her same story there, as well, and wanted to reiterate that I was sorry she was having a bad time.

Although I was enthusiastic about recognizing her story in another context, and happy to possibly have another way to connect with her, I was not so enchanted that I would violate her privacy by publicly writing her.

But she immediately recoiled, as if I were stalking her (likely misunderstanding my use of the word “lurking” which, now that I think about it, does have a creepy connotation!) [N.B. Just because someone is comfortable with the message board application and posts regularly, doesn’t mean she’s familiar with the slang.]

She instantly started a new thread (an initial message board post to elicit other comments) on the PLM Forum entitled “I won’t be calling MSFriends again” and thus outing herself as an MSF caller. 

Horrified, I posted to it myself, apologizing, but also pointing to my PLM profile where it showed that I had been a member since March 2008, way longer than I had been answering phones for MSF.  Then, I invited other PLM readers to volunteer at MSFriends and gave the web page address.  

I then wrote an email to the MSF coordinator, apologizing for the negative feedback

But obviously not everyone immediately trusts that MS community members are actually MS community members and so can be found across multiple venues.

I have learned my lesson: don’t PM anyone outside MSF that I recognize from MSF.  Even as a follow-up to an incomplete call.  Even with the best intentions.  Just leave it alone.

Related links

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The good use of my time

I was always reluctant to go to the local M.S. support group meetings.  Oh, I went when I was first diagnosed, but felt symptom-free and irrelevant.  I felt like I didn't have anything to offer those already in wheelchairs and dealing with the Social Security Disability system, for example.

Now that I am more disabled, I find that I'd rather spend my limited energy on other things.  Like this MSFriends Peer Support Hotline.  Everyone I've talked to so far has been a "repeat caller" and I'm constantly surprised and pleased that my experiences and the seemingly random things that I've gone through has allowed me to personally relate to every repeat caller so far!

For example:

M. sounds like a NY socialite. She recently took a fall and. is now relying on a wheelchair (me too) and availing herself of the public transportation van service for the disabled.  I told her that I had been finding comfort in Nancy Mairs' book Waist High in the World.

She was moved to a short-term nursing facility but now has decided to move into an assisted-living residential facility. She asked me whether I thought it would be better to live near her children or to live near her friends.  I said friends, definitely, that I consider it a quality of life necessity, but that she should consider the source: I'm childless.

E. is suffering from a similar type of bowel issue to what OH is currently wrestling with.  Because of this, I was familiar with his meds.  He told me his gastroenterologist and his neurologist were not sharing information. So I suggested that he continue to look for doctors, that it was not inconceivable that he could be suffering from more than one thing, and that he needed a "quarterback" to manage the team.

D. was despondent over her chronic M.S. fatigue.  I told her that I had recently read a description of M.S. fatigue as a "system-wide shut down."  No wonder she was suffering!  I told her to be gentle with herself, to allow herself to take naps during the day, but she replied miserably that she had found that they interfered with her nighttime sleep. 

So I reminded her that there was medication that could help, and she admitted to me that her neurologist had given her a prescription for one but that she was afraid to take it.  Did I know of anyone who had already taken it?

Amazingly, I had!  But I told her that I was not taking it right now because fortunately I had experienced M.S. fatigue as a flare-up, an exacerbation, and so I wasn't dealing with it at the moment.  I told her that it was okay to take 1/2 or 1/4 of a pill at first to experiment with how it affected her.

J. sounds like the Eeyore character from A.A. Milne's Winnie the Pooh.  You know, "Don't mind me but thanks for noticing."  He apologizes for taking my time every time he calls.  He didn't want to have co-workers feeling sorry for him, or giving him special treatment, so he didn't tell them about his disease until his boss pulled him aside to "talk about his drinking."

S. is in Louisiana and needs a neurologist that accepts Medicare.  She says that her MRI scans were lost and one of her neurologists went missing after the hurricane Katrina.  Another died of old age.  When I suggested that she could go to medicare.gov to find a doctor that did accept Medicare, she admitted with embarrassment that she didn't have a computer.

I felt like such an idiot to assume that everyone had computer access in their homes now.  I got her street address, then went to the site myself and printed the list for her.  I also included in the envelope the phone number for the Louisiana chapter of the National Multiple Sclerosis Society and some other local resources. 

T. can no longer play his guitar or paint, but all his friends are urging him to write a memoir, to tell his story.  He's wants to do it but he's paralyzed about where to begin. 

I told him that I've been interested in writing since I was young, have read a lot about it and have taken lots of classes on it. I then suggested that he not get hung up on the intro.  That he should just remind himself that he can come back to it later, but just to dive into the story.  Maybe start with his childhood.

And even then, like the author Anne Lamott notes, "(W)ith writing, you start where you are, and you flail around for a while, and if you keep doing it, every day you get closer to something good."

Happily, I'd like to reiterate that I feel strangely, uniquely qualified to volunteer here and that I have discovered a purpose.  This is truly peer support. These are my peeps.

Related links

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I am able to volunteer

I’ve started volunteering to answer phones for the MSFriends Hotline. This is something I’ve found that I can do from home. It is a “peer support and referral service” for people who have M.S. or are suspecting a diagnosis of M.S., their families and friends.
 
All volunteers have M.S. so it makes me feel uniquely qualified to participate in society in this way. And I find that it gives me something to look forward to when I wake up in the morning. I love it.
 
The program has some baseline requirements (see the web page: http://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One; link still works as of 01-27-2019) so I had a phone interview. Then I was provided a cell phone to be used solely for this purpose and I was given training.
 
Now when my assigned time comes, I call in to be placed into the queue of volunteers who answer the MSFriends toll-free number which rings through to my cell phone.
 
I am required to volunteer for a minimum of five hours each week, so for May I originally signed up for one hour each day during the week. But the traffic for calls seemed very light so I conferred with my trainer then increased my sign-up times to two hours.
 
Since I’d already signed up for a daily slot during the weeks of May, the result is that I’ve now added five additional hours per week. As a team player, I didn’t want to be deleting any times I’d already signed up for, so I’m a bit overextended for the rest of this month.
 
It turns out that my employer has a program to give employees company time off to do volunteer work and to match employees’ charitable donations. So I got approval to use my work computer and to use company time to sign up to answer the hotline during work hours.
 
So next month I’ve signed up for one contiguous five-hour chunk each week during work hours and plan to continue to experiment with my schedule until I’m satisfied.
 
One of the purposes of the hotline is to provide 24-hour support to the newly diagnosed, but every call I’ve taken so far has been a repeat caller. So what I realize is that we also serve as a sort of telephone support group to augment the local support groups that people with M.S. are encouraged to attend.
 
Putting my own, unique stamp on this service, I add callers to my cell phone contact list so that when they call again, their names pop up on my phone and I’m able to greet them by name. And I’m now listening to people with M.S. all over the country!

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Postscript

Readers are now asking good questions based on my last post.
 
Was the improvement of M.S. symptoms shown in all of the patients or only some? Did the panel say how long the improvements lasted? Were there any bad side effects to the angioplasty procedure? Can’t the patient just go ahead and have the procedure even if doctors aren’t sure why a positive change happens?
 
I’ll try to answer them here for all to see.
 
***WARNING: What follows should not be taken as medical advice. It must be considered my opinion. You should always defer to your doctor.***
 
At this point, any improvement in symptoms is all anecdotal. We can’t measure it. There is no way to prove it. So unfortunately we have to consider the placebo effect a possibility. Which is why more trials are needed: to rule this out.
 
If the blockage recurs, we can see that on an x-ray but we don’t yet know what this means. Does this also mean the symptoms come back? Also, there is no established time frame by which, if a recurrence is going to happen, it would have and if it hasn’t, a patient is in the clear.
 
At this point in history, the only tool we have to check in on the progress of M.S. is an MRI (magnetic resonance imaging) scan. But in M.S. this has been an imperfect tool: the scarring that happens on the brain and spinal cord, which we can see on an MRI scan, does not correspond in any way with a patient’s symptoms.
 
Multiple scars are enough to tentatively diagnose the disease, with both visible and self-reported progression over time. But it’s a mystery how the scarring we can see in a scan relates to damage that we can’t see happening deeper in the brain.
 
And just when you think that at least it’s something we can use to gauge disease activity, it disappears. Sometimes what shows up in one scan is no longer visible in the next. I know, weird.
 
Based on an MRI, there is no way yet to tell what is being affected: speech, cognition, mobility, vision, even swallowing. We can have any one of these or all of these, at different times, or at once, or even one incident and nothing more.
 
Can we figure out how to translate what we see on an MRI into discrete symptoms? Or maybe it could be an indicator of symptoms to come? But I digress: this is a separate line of study, maybe for another time.
 
Nevertheless, one of the first questions has to be whether improvement to CCSVI corresponds to the images on the MRI.
 
As far as bad side effects, Dr. Zamboni reports that the angioplasty procedure is safe and well-tolerated, with nothing riskier (yet?) than headache, nausea and possible recurrence. But further reading warns that vein rupture and stroke should also be considered risks. As is permanent nerve pain.
 
A doctor at Stanford was performing his version of this treatment, inserting stents, which have successfully been used to widen clogged arteries of the heart, into the jugular veins of M.S. patients. The problem that developed here becomes apparent when you consider the biology.
 
Arteries carry blood away from the heart and thus go from narrower to wider as they get further from the heart. A stent can break free and travel downstream without causing a life threatening complication.
 
But veins carry blood to the heart. Veins go from narrower to wider as they get closer to the heart. So a stent here can break free and end up in the heart. And it appears to have happened here.
 
This doctor treated about 35 patients, then the treatment option was discontinued because one of his patients died from a brain hemorrhage and another had to have emergency open heart surgery to remove a stent that had dislodged and traveled to his heart.
 
Now the family of the woman who died maintains that she did not die from the procedure but from an adverse reaction to the medications prescribed for aftercare. This may well be, but it highlights again that this is a brand new discovery and treatment. Maybe the aftercare could have been more closely monitored.
 
Ultimately, we expect doctors to both know and fully disclose the risks of a procedure. It is unclear how much warning of risks was given in this instance. It is also unclear to me if that could have even been predicted..
 
The moral I take away from this is that a doctor must balance patient safety with scientific discovery. I guess I have realized that I’d prefer that he or she err on the side of the patient. Then when confronted with all known facts, let the patient decide. Some patients are still willing to be the “first” and assume the unknown risks.
 
I’m not. As an active patient it’s my duty to be pushing for more aggressive treatments and discoveries, but I’m not willing to risk dying or even permanent nerve pain. At this point in my life, I have too much to lose.
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My world is narrowing

I once read a book titled Wide My World, Narrow My Bed (about consciously choosing to live a happy and adventurous single life). I love that title!  It has stayed with me.  Lately I’ve realized that my situation has become the opposite: wide my bed–we sleep with dog and cats on a king-sized mattress–and narrow my world.   Because ihn recent years, I leave my home less and less.  My world is shrinking.

I’m not bringing this up to encourage pity or sympathy.  I’m trying to examine and explain it logically and with detachment. For example, I now work from home full-time, teleconferencing into the office for meetings and collaborating with co-workers on projects via e-mail and instant messaging (IM).

I am still an active member of the local chapter of my professional group, the Special Libraries Association (SLA), although I rarely attend meetings in person anymore.  I do serve as owner of our e-mail discussion list and I recently completed a two-year stint formatting, posting and billing for the local job listings on our web page.  For ths I even got an award.  Monthly we have our board meetings, with everyone calling in to teleconference.  

So for now I’m still able to volunteer my expertise and to work full-time.  

I bought a house near the coast, thinking that cooler weather would be better for me if my disease advanced. That is, in a worst-case scenario (which I now consider just a worse case scenario. You know, hope for the best but plan for worse).  [I can’t believe I’m at “worst-case” levels–you can always find someone worse-off than you.]

I use the scooter to get around, which helps with my waning mobility, but I’m also starting to be very sensitive to even minor increases of temperature and to experience more frequent bouts of extreme fatigue. From time to time my friends and family have pointed out that I’ve always been a homebody, that I’d have a harder time with this decline if I was an avid mountain climber or marathon runner. I suspect this would be true.  

But I’m thinking now about how I can take advantage of being less mobile, turn it into a positive. Like make better use of the telephone and my organizing skills.

One thought is to become a birthday monitor–keeping track of everyone’s birthday, age, anniversary; sending cards and keeping everyone else informed.   Another is to set up a telephone calling schedule to make sure I stay in regular contact with friends.  Also, from time to time someone will ask me if they can give my phone number to a loved one who is newly diagnosed.  I always say yes, but I’m remembering how surreal it is to be newly diagnosed and thinking I can be more proactive and call them.

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