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

Tagged : / /

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

Tagged : / /

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

Tagged : / / /

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

Tagged : / / /

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!

Tagged : /

I am able to volunteer

image from lorna.typepad.comI’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!

Tagged : /

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.

Tagged : / / /