Category Archives: Working/Volunteering Info

The National MS Society’s Volunteer Match

I’ve found a helpful link on the National MS Society’s Facebook page and I want to pass it along. This website—— links volunteer hopefuls with opportunities with the National MS Society (the U.S.) as well as with many other organizations.  Since I’ve been exploring more volunteer opps to get me out of the house, I found this site to be very useful. I even located some opportunities at my closest MS Society chapter. Have a look….

How the National Telecommuting Institute Works

I recently received an email from someone questioning a call they got about working for the Internal Revenue Service. Since I posted about NTI and their at-home employment for people with disabilities, I want to now clarify that the National Telecommuting Institute is a non-profit organization based out of Boston, MA. In order to be considered for employment with them, you must go to their homepage and click on “New Applicants Start Here.” This will lead you to a general information page about NTI and then you may browse current openings by clicking the link to the upper left of the page. If you find a job that interests you, you may click on it and fill out an application towards the bottom of the page. Then NTI will contact you to interview you and assess your computer skills. NTI contracts with the Internal Revenue Service on a yearly, seasonal basis, and they do offer work with them. However, solicitors calling about working for the IRS have no connection with NTI. You must make contact with NTI first in order to be considered for employment.

Telecommuting Work for those with Disabilities

Having multiple sclerosis and also having been sparsely employed for the past five years, I understand the frustrations of finding decent, manageable work. Living with a disability can make staying out in the workforce, whether full-time or part-time, a very difficult task. I am now on Social Security Disability Insurance (SSDI), but I am still able to work part-time on top of this benefit.

For two winters I found myself employed (seasonally) by a telecommuting company that specifically hires those with disabilities: The National Telecommuting Institute. This agency is located in Boston, MA and it works with clients’ vocational rehabilitation counselors to train them in online customer service work. NTI also gives refunds to staff for out-of-pocket expenses— internet connection, phone services, equipment purchases, and so on— and it helps staff maintain work while continuing their disability benefits. If clients are not receiving disability insurance, they also have some opportunities to work full-time (in the comfort of their own homes.)

Another telecommuting company, located in Colorado, is Alpine Access, which employs customer service staff for businesses such as credit card companies, retail stores, direct marketing companies, and airline corporations. There are generally more employment opportunities with Alpine Access, although NTI tends to work more supportively with its staff.

NTI is currently recruiting for its seasonal Internal Revenue Service program. This is the project that I worked on for two winters (November through April), and it is a great launching pad for future customer service work with NTI, Alpine Access, or other telecommuting agencies.

MS and Identity

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

MS: Americans with Disabilities Act

This week at Joan’s chat room, things were a bit more serious as chatters talked about their troubles with their jobs. One woman in particular was having a rough time getting her workplace to understand her need for a certain schedule. Her union was giving her a rough time and it seemed necessary for her to seek legal action. In the Americans with Disabilities Act, disabled workers are protected under certain circumstances and can be given reasonable accommodations to perform their jobs. Disability in the workforce can be a very gray area, but knowledge of the Americans with Disabilities Act and proper counsel can help those with MS stay out in the workforce for longer periods of time.

If you are having trouble maintaining your job due to multiple sclerosis complications, you may be qualified to have reasonable accommodations in order to carry out your work. Contacting your national MS organization in your region of the world can help you to get pertinent legal information. The National MS Society in the U.S. can help American MS patients find out about employment rights, legal counsel, and the ADA. The Americans with Disabilities Act homepage can be viewed for references, and a toll-free information line gives callers access to live help.

Multiple Sclerosis and Denial/Acceptance

I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.

Online Freelance Writing Opportunities

I like to mention financial opportunities that I come across. I know how hard it is to make a decent income and also have multiple sclerosis, so I especially think MSers who journal or blog are perfect candidates for any of the open spots at

This website is owned and operated by the New York Times Company and it pays a good monthly stipend for first and second year writers ($725.) The site states that writers can exceed the stipend amount with earned ad revenue, so the potential for income can exceed $1K a month, which is pretty good for writing a weekly article and a weekly blog post. has hundreds of topics, with many current openings. Some are a little specific, but maybe you have a vast knowledge about Seattle or needlepointing. Another option is to suggest a topic to (I’m in the process of this, since I couldn’t find an open topic that I could extensively write about.) In any case, those trying to obtain at-home work might find writing for pay a good, flexible solution.

PS: mentions “published writing experience”, but many times they substitute vast knowledge for experience. Browse some of the established topics. And keep in mind that blogs count as great writing portfolios for potential gigs.

The Return of Autumn and Volunteer Work

I’m glad the summer is coming to an end. We’re still having a few scorching days (90 degrees and above), but it’s summer’s last stand, I suppose. Then things calm down a bit and weather in the 60- 70 degree range takes over for a while. Good. I’m tired of the air conditioners and feeling like a limp dish rag. And I’m looking forward to some new fall endeavors.

I’m back volunteering at the library system. I’ve been there most Fridays ( for 2 and 1/2 hours ) since the beginning of July, helping with their literacy program by processing books for kids in social service custody. More recently I’ve worked with the system’s database to edit volunteers’ info and add new volunteers to the database. And the coordinator of the literacy program will have me come in another day each week to help with some of the PR stuff (phone calls, appointments, etc.) The last piece of the library volunteer puzzle is resuming my role as an English conversation group leader. It’s fun and helpful for foreign-born patrons to practice talking in a casual setting. Almost more like a weekly club to meet other immigrants and converse. I did this for several months in the beginning of this year until working and volunteering flattened me.

I like the whole volunteering premise. There is not so much pressure to be well and “on.” Somehow, with this notion, it makes it easier for me to schlep myself in to volunteer . I admit that I don’t have a ton of hours: less than 10 a week. But as my therapist once said, sometimes it’s important to thoughtfully build up a routine that will have a chance of lasting. So I’ll see what I’m capable of in the coming months. One of the ironies in my life right now is that I got accepted into an online library science program through San Jose State University in July. I’ve taken a non-matriculated class already, and 6 months ago this news of acceptance would have thrilled me, but since I am currently in work limboland, I’ll just wait until this winter and decide whether to pursue something that might not come to pass.

I would like to do some more work with my MS Society chapter. I’ve volunteered at their walk and bike events, but I’d like to be more closely involved with MS patient support. The nearest location is sort of a hike, but maybe there is something I can do from home. That’s the beauty of computer technology.

My last addition is to get to a yoga class, which I’ve been dodging for a while now. I guess I’m a little fearful of falling, since my balance is for shit. So I need to bolster myself up and just go. And Nadja has told me that yoga is great for MS. I keep reading this in MS books, too.

So I’m really just thinking out loud, but I have an easier time seeing things through if I write them down or tell them to someone like you.

MS and the Family Medical Leave Act

The United Stated Department of Labor protects employed individuals who need to take a medical leave of absence for themselves or for immediate family members. This protection is referred to as the Family Medical Leave Act (FMLA.) It is designed to grant workers an unpaid leave from their jobs for up to 12 weeks per year, and stipulates that a person can return to his or her original position or one similar/ with similar salary. For workers with multiple sclerosis, this can be good and bad news. Here’s why:

  • The FMLA can keep a worker in the workforce, but he or she must have been working for at least 12 months with an employer prior to asking for a leave of absence. This is great for people who have been with the same company or organization for a year or more, but it does not protect individuals (especially MSers) who might be returning to the workforce in a new job after being home-bound. Those trying to test the waters might find themselves up a creek when they do not have 12 months of work invested and then they suffer a long relapse.
  • The FMLA covers workers who are employed at a company or organization with 50+ employees. This works out well for employees of larger companies, but those who might work for small establishments are not protected. Many times people with MS hold part-time jobs with such places.
  • The FMLA cannot guarantee the reinstatement of a high-level, high-salaried (key) employee. It will cover the leave, but the decision of whether to reinstate is determined by the employer. This is trouble for any executives (especially males, who tend to be in higher-level positions) who might fall ill with multiple sclerosis. Later MS onset also correlates with a higher likelihhod of disability, such as with primary progressive MS. Unfortunately, employees who tend to be key players usually fall in this over-40 age range.
  • Probably the trickiest clause in the Family Medical Leave Act is the requirement of an employee to have put in a minimum of 1,250 hours in the year prior to the request for leave. This breaks down to roughly a 24 hour work week. Here lies a big problem. Many people with MS cannot physically handle a 40 hour work week, but maybe they can manage part-time, lower-stress employment. But can everyone work 24+ hours a week, and then manage to make it to the one year minimum requirement? This clause makes it so difficult for people with multiple sclerosis to get back on their feet and try to sustain a new, part-time job. It becomes very frustrating to keep trying to stay employed outside of the home, only to be a person who falls through the cracks in the FMLA’s base.
  • The last problem is the fact that people with multiple sclerosis who suffer regular, long attacks might need to use the FMLA on a yearly basis. But they will be shorting themselves a minumum of 288 hours (the prior year’s 12-week hiatus) for the next work year period, thus making them need to increase their weekly minimum hours to almost 30, just to qualify for the FMLA again. Most people who use the FMLA use it once and don’t always use the entire 12 weeks. People with multiple sclerosis who are able to work outside of the home often need the entire 12 weeks on a yearly basis. But with all of its exceptions and restrictions, do many MSers even have a shot at sustaining this yearly Act? An inquiring mind would like to know..

*For more information about the Family Medical Leave Act, visit the US Department of Labor’s website.

MS and a Regular Schedule? Hmmm…

I’m trying to keep a sense of humor about it, but yesterday I was in tears because I could not get to the library to volunteer. Only my second scheduled time there. I emailed the volunteer coordinator at the last minute— who was very understanding— after fruitlessly trying to get myself ready and into the car in 95 degree weather (full humidity.)

Since my latest relapse, I have been having intermittent symptoms. I was doing pretty well for a couple of years, with very few symptoms each day (except the annoying bladder/bowel issues.) I have developed more fatigue, or maybe I should say “lead limbs.” My mind usually feels awake, depending on if I get enough sleep. It’s my limbs that have been troubling me. They feel like cement sometimes, and my bad left leg and right hand trouble me the most. Not sure if it’s the hot weather, or the symptoms have decided to return and stay.

These unpredictable bouts have made it very hard for me to keep a regular schedule. Add the flu-like side effects of the Betaseron (still happening after 3 years of use), and each morning has become a crap shoot. When I recently worked at the library, I was so glad they gave me afternoon hours (1 – 5 pm.) Now, the 1pm hour of arrival is iffy.

I know volunteering is just that: voluntary. But being a former, conscientious worker makes it hard to become a “hopefully-I’ll-make-it-there-sometime-this-afternoon” volunteer. Just because we have MS does not make us feel any less responsible to commitments.

An issue I have to stop beating myself up about. Working on it.

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