Author Archives: Jen

The MS Blog Becomes the MS Website

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I’ve really enjoyed blogging about my MS journey. It’s therapeutic to just explain all of the weird, scary things that have happened to me. And to know that others, especially from the blogging community, have read and understand. So I’m a little sad that my personal multiple sclerosis story will now be put on hold as the rest of this MS website begins.

This site will start branching out into different areas, mainly: articles about the types of MS, medications/treatments, helpful living tips, bios on famous (and not so famous) people with MS, latest MS news, healthy/ easy recipes for better nutrition, and so on. There will still be blog entries about my life with the MonSter, but the bulk of the website will now begin. Lots of key word optimization, high repetition of the words “multiple sclerosis” and “MS”, selected advertising that is appropriate for the content, and tons of information that is probably too elementary for the veteran MS blogger. And dare I say MUNDANE? So as not to preach to the choir, this post explains the turn of focus and the forthcoming articles and info for those searching the internet for MS information and news. For newbies and people who basically just want the facts. Kinda boring, yes, but I actually love writing about health topics, and the need for researched information that isn’t presented in a cold, clinical manner is so important.

Feel free to continue to visit, because I’ll still be doing some blog posts, but this is a forewarning so as never to patronize readers or bloggers. And yes, it’s always free to read if you just don’t click on the ads! I will still enjoy reading others’ blogs, and have compiled my own group of ones which are heartfelt, informative, hilarious, and multi-faceted. I admire veteran bloggers because I honestly cannot even keep a steady personal journal— I’m lucky if I check in with myself once or twice a month! So I’m happy that I can provide links to good blogs.

And so starts the long, arduous process of building a free-standing website. Really a labor of love.

Posted in Blog

Book Review: The Four Agreements

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The Four Agreements

I just came back from volunteering at the library and I’ve had a certain book on my mind. I read it during some MS relapses, just to remind myself of what’s really important. I’ve read it again recently because I’m probably jonesing for some good non-fiction and haven’t found any. Nevertheless, here’s one of my favorite books and the reasons why:

The Four Agreements by Don Miguel Ruiz has simple, layman’s techniques for living a joyful, true existence. This Mexican spiritualist explains his Toltec beliefs that transform a life of suffering and sadness into a vehicle for optimism and growth. He uses four simple ideologies to help steer people in the direction of happiness, no matter what their circumstances:

  • The first agreement is “be impeccable with your word.” It doesn’t quite mean what it implies. I initially thought it meant “don’t lie or make empty promises”, but it is quite a bit more. Ruiz explains that whatever comes out of our mouths should be honest but also pure in intention. People are guilty of slandering others and passing along useless gossip and negative energy. I know I’ve been guilty of such. Ruiz says the first step to happiness is to remove such verbal weaponry from your life. Then intention can become pure and true.
  • The second agreement is “don’t take anything personally.” Sounds simple enough, but there’s more to it. Everyone has his or her own agenda, thoughts, background, personal situation, and so on. What comes out of a person’s mouth is merely a reaction to his or her own situation, and nothing to do with you personally. It might seem that way, but because we all have struggles and personal lives that are not completely apparent to others (usually), we can never take insults or ignorant responses personally.
  • The third agreement goes naturally with the second agreement: “don’t make assumptions.” Again, Ruiz mentions, it is impossible to know everything about a situation or a person, so to assume things about others can make you take information or words personally. Then you become caught up in the vicious cycle of slandering and then being slandered. Tough, unproductive cycle. Ruiz suggests taking everything with a grain of salt, because you really only know fully about yourself. The rest of life is made up of other people’s realities.
  • The fourth agreement (which is my favorite and probably a great mantra for people with multiple sclerosis): “always do your best.” This is just a matter of taking each day and giving honestly what you can. Today’s best might be venturing aided or unaided down the street. Tomorrow’s best might be intently reading a good book and gaining knowledge. Ruiz emphasizes the importance of achieving the first 3 agreements to leave the mind and body pure to accomplish one’s personal best. And one’s personal best is always enough.

I would add one more personal agreement that I try to follow: “have a sense of humor.” Because it’s gonna take a hell of a sense of humor to stick to the rest of the agreements! Find out more about The Four Agreements…

Posted in Book Reviews

MS and Medicare Parts A, B, and D

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Google Images

I just came back from dropping my Medicare parts A and B coverage. I stopped in at my local social security office and opted out. Here’s why:

  • My husband has us covered under his small (less than 35 employees) company coverage, and even though it socks us with an almost $800 monthly premium (combined), it doesn’t cover dental or vision expenses, and it has a $30 copay for all medical visits, it DOES cover my Betaseron ($2k/month) in full, so there’s no copay.
  • I investigated Medicare’s coverage. Part A covers hospitalization, and it is similar in coverage to Bill’s company plan (and free with part B), but I have some issues with Part B, Medicare’s medical coverage. There is approximately a $97 premium each month (fine) and a $135 yearly deductible (again, fine.) But after the deductible, Medicare recipients pay 20% copayments on many medical costs. Even on Xrays/ MRIs. So routine MRIs, something that multiple sclerosis patients see as the norm, could end up costing about $4k a year or more, with a patient copayment of $800. Bill’s small company insurance copayment: $30/ per visit x 2 visits = $60. Just the crazy cost for MRIs put up a red flag for me.
  • Next, I learned about Medicare Part D, which I am not automatically enrolled in and must elect. My father warned me about this prescription plan. He and my mom, who made modest livings as public school teachers, really lucked out in their retirement. They both have solid pensions and my father’s good health coverage (paid for by 25+ years of work as a guidance counselor.) So they have Medicare and also their own good coverage for prescriptions. Part D is a good plan if the recipient is in general good health and doesn’t have many expensive presciptions. Ironically, this is the coverage for seniors, who tend to acquire more and more health problems as they age, causing them to need more and more expensive prescriptions.
  • For a lot of people with MS, good drug coverage is very essential. But when I asked for the best cost for my Betaseron (there are various drug plans under Part D), the best the Medicare rep could come up with was a $250 yearly deductible (fine) and a monthly copay of about $514 until I reached about $4k (after 8 months), and then the copay would go down to approximately $180/month. In the beginning of the year, the whole deductible and higher monthly copay would start again. UGH. Medicare Rx coverage: at least $514/month for most of the year v. Bill’s plan of a flat rate of about $390/month per person for prescription, medical, and hospitalization. And don’t forget the monthly Part B premium of $97. The choice seemed clear. I picked the lesser of the 2 evils.

Here is the part that makes me a little nervous about my decision: I will be getting the monthly Medicare premium back in my social security check, but because I opted out, if my husband somehow loses his job and we don’t have immediate coverage, to get back into Medicare coverage it will cost me another 10% on top of the Medicare $97 monthly premium for every year after I dropped the coverage. So if I find myself needing Medicare in, say, 14 years, I will then pay a monthly premium of about $240+/month for pretty mediocre to bad coverage. That’s not even counting the yearly increase in the original monthly premium. Or the $514+ monthly copays for the Betaseron!

If my husband worked for a larger company (100 employees or more), then I would incur no penalty for dropping and then reinstating Medicare at a later date. Fortunately I can reinstate it when I’m 65 with no penalty. Hopefully something better will come along in the meantime.

Posted in Social Security/ Disability/ Medicare

Tommy Hilfiger Fights Against MS

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Tommy Hilfiger, Google Images

I have a bit of an interest in the fashion industry. Back when I was in school, I did a 1-year program at the Fashion Institute of Technology (NYC) and got a minor in buying and merchandising. It was one of the most interesting years of my life. Lived in midtown the fall semester (on-campus housing), then moved downtown to the East Village with an old friend during the spring semester. I enjoyed Manhattan and all its eccentricities, its art and music scenes, as well as its unbeatable fashion industry. Although I have to admit that I now pretty much dress like a page from the weekend-wear section of an LL Bean catalog.

Despite my lack of fashion these days, I still really like Tommy Hilfiger’s clothing and accessories, largely because they’re accessible to the general population. The products are durable, and you can get them on sale at Macy’s (and Macy’s online) and find great buys at Marshalls or TJ Maxx. So maybe you’re wondering why I’m going on about such a fluffy topic……Well, Tommy Hilfiger, as some people know, has a sister with multiple sclerosis.

Hilfiger, in collaboration with Nancy Davis, an MS patient and known philanthropist, put together a yearly event called “The Race to Erase MS.” This year marks the 15th event. Now I have read Davis’s book, Lean on Me, about chronic illness, and although I don’t think she represents the general multiple sclerosis constituency (lower- to upper-middle class and moderately to severely affected by the disease), I feel that anyone who has the connections and money to help the MS cause should certainly do so. And I’m happy to see that Tommy Hilfiger does what he can with this event, which features a high-end auction (including jewelry and luxury trips) and a celebrity fashion show. Hilfiger has also designed various orange (MS’s new identifying color) fashion items, including a bracelet and t-shirt, and all the proceeds from these sales and the auction go to the “Nancy Davis Center Without Walls” program. This is a collaboration of the top multiple sclerosis research facilities in the nation: Harvard, Johns Hopkins Hospital (Maryland),Yale University School of Medicine, The Mellen Center (Ohio), Oregon Health Sciences University, and the Universities of California and Southern California.

Celebrities form the honorary committee: Teri Garr, Tom Arnold, Tony Danza (and wife), Sela Ward, Don Henley (and wife), Natalie Cole, Dustin Hoffman (and wife), and others. The patron committee boasts even more famous names. The event takes place out in LA in the spring, with a next day meeting (free and open to the public) for anyone who would like to pose questions to the represented research facilities.

This 2 day event raised more than $2.5 million in 2007. The price of tickets for 2008 started at $1,000. It’s nice to see that wealthy, high-profile people are putting their money where their mouths are and using their celebrity to help raise a hefty amount of money for multiple sclerosis.

For further reference:

Posted in Fundraising Info

Multiple Sclerosis and Emotional Counseling

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Before I had MS, I never thought I’d seek the help of a therapist. My life was pretty normal and nothing was so stressful or overwhelming that positive thinking or a good night’s sleep couldn’t cure. I knew some other people who were in therapy and/or taking antidepressant medications. For one reason or another, they had to seek counseling to sort out their problems, whether they were family-oriented, job-related, or from plain old organic depression.

Then I became the first out of my cohorts to develop a chronic, serious medical condition, otherwise known as MS. I became the one who people commented about: “How’s Jen doing?” “Has Jen been feeling okay lately?” And I suspect: “Do you think Jen will be okay? Do you think there will be a cure for her before she gets too bad?” This alone could send anyone into therapy.

When I was 34, my multiple sclerosis attacks became more serious, as I experienced a long bout with double vision, was unable to drive for 6 weeks, had many struggles making it to my part-time, low-stress library job, and was getting acclimated with doing injections and suffering from their side-effects. The job of do-it-yourself therapy came to an end as I realized the need for emotional counseling. This is what I discovered:

  • The odds of having MS and needing an antidepressant are great. Multiple sclerosis can cause situational as well as organic depression. Coping with a chronic, life-altering disease can be depressing, and taking a disease-modifying medication (interferon drugs particularly) can add to depression. Interferon meds— Betaseron, Avonex, and Rebif— are proven to lower serotonin levels (the physiological cause of depression.) Add to this the possibility of acquiring MS lesions in areas of the brain that monitor mood, and there are overwhelming odds that depression will set in.
  • There are various types of therapists at our disposal. A psychologist, a PhD-holding professional, can counsel patients and offer psychological feedback. A counselor, a professional with a master’s degree in psychology, is another type of therapist. Social workers, with master’s degrees in clinical social work, also counsel patients and have access to many community resources for further help. I have been in counseling with a social worker for over 2 years, after first seeking the help of a psychologist. I found the latter type to be more interested in the psychology of my problem, whereas the social worker gives more practical, everyday advice.
  • Psychiatrists, who have the reputation for being the most highly-educated psychological professionals, now usually just prescribe medications. They have gotten away from the counseling and tend to “check in” with patients and see how the antidepressants/anxiety meds are working. Something to do with what insurance companies will presently pay them.
  • Therapy can be as much as a few times a week or once every couple of months. I initially went once a week, then I cut it down to every other week. I went once a month during the easier times, then once every couple of months, and now I’m back to once every couple of weeks as I sort out this most recent multiple sclerosis relapse/setback.
  • Counseling is covered by most insurance plans. I pay the same copay as I would for a primary doctor’s visit. However, there are sometimes caps to how many visits a person can have for a one-year time period. It’s important to check with your insurance provider.
  • Counseling helps me vent my frustrations, anxieties, and goals to an unbiased ear. This is the counselor’s job, whereas my loved ones sometimes need a break from the MS woes. Being unbiased, the counselor can also give practical advice. She isn’t swayed by emotions, and will help me make objective plans and figure out new strategies.
  • Therapy is not for everyone. I find it cathartic, much like writing for this blog. Others might not feel this way. It’s an individual decision, just like deciding to take an antidepressant or any other medication. If you are suffering from anxiety or depression, it might be a good idea to seek counseling, though, because you don’t have to suffer. It’s your decision. As His Holiness the Dalai Lama states in his recent book How to Practice the Way to a Meaningful Life, “Please adopt whatever might assist you. If you do not think it would be helpful, just leave it alone.”
Posted in MS and Emotions

MS Sunny Day

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Google Images

Hallelujah! It’s a nice, non-humid day in New Jersey. I volunteered at the library for 2 1/2 hours, looking up the age/grade levels at the Amazon and the Barnes and Noble websites for the donated “Sparks” program books. The volunteer coordinator said they sent their 1st batch of crates to the 2 social service agencies, where kids waiting to be placed in foster care can choose 3 books and receive backpacks. I also put “This book belongs to_________” plates in the front of a bunch of books. This program is great, and I’m glad I started working on it during its infancy. I’m finding that if I take my medication earlier in the day, I don’t get “wake-up” fatigue, so I have been able to get to the library 4 out of 5 times so far. Not bad!

So I’ve been getting myself out and the next thing to tackle is a yoga class. A woman is holding them at a first aid building down the road. Sounds like she has worked with people with diminished mobility (she has had classes where people use chairs for aid.) I’m gonna try the Tuesday evening class first, because I really am still a night owl.

We’re probably gonna go see the new Batman movie sometime this weekend. And I’m visiting my friend/old roommate and we hope to hit the LL Bean store (only one in this neck of the woods.) I will go slow and rest when I should, even though I don’t want to.

Peace out and enjoy the weekend… Jill, if you’re reading this post, we’re trying to get to the aquarium before you go back to teaching. We want to get Steven there, because he had such a great time last year.

‘Bye!

PS: Look for information on MS and seeking emotional therapy in the next post.

Posted in Blog

Multiple Sclerosis and Blogging

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Microsoft.com

Okay, I’ve been blogging now for almost 2 months. As a writer for a women’s health website, I have a tendency to report the facts, mainly from the 3rd person perspective. I research health topics and collect my sources to document at the end of the articles. I have journalistic instincts in my blood (probably dates back to college, where I wrote plenty of papers towards an English degree.) I learned how to write from the opposing view (playing devil’s advocate?) I even wrote a (very bad) screen play! But blogging for the public eye……This is quite new.

What I’ve learned so far from this experience is that I am still quite a journalist and my site is a bit of a hybrid. I like to think of it as a website with a blog format. My husband Bill is the website development nerd: he knows how to create them with HTML, Frontpage (a formatting device), search engine optimization, and reciprocal linking. I am more of the creative force, concerning myself with the writing, photo selection, internal linking, and commenting. Together we’ve created a website which happens to have a blogging format— WordPress. A couple of times I’ve had to tone down his entrepreneurial instincts with the plea, “It’s a website, but it’s about a personal topic— people’s health.”

That said, I’ve actually found blogging to be a cathartic activity. I’ve posted at MS message boards before, under the anonymity of a user name. Here, my MS story is open and available to many people— strangers, loved ones, new blogging acquaintances. It is a place to drop some guard and post what’s really on my mind. Yet the journalist in me still tugs in the direction of business. So a hybrid website it is. A touch of personal with a dash of unbiased journalism. And of course, search engine optimization….

What I’ve found and liked in others’ multiple sclerosis blogs are the real, raw emotions. I’ve (slowly) read a few other sites and have found them so open and honest. Writers blog about their symptoms, their limitations, their strengths, and their frustrations (usually towards the health care industry.) I’ve read some poignant poetry, some gratitude lists, a bit of news about the gay and lesbian communities, and rants about the US’s sh-tty health system and insurance industry (and Canada’s more universal coverage— Michael Moore: you were right!) I think one of the most touching blogs is one in which the writer vents but does not comment or link to others. Almost a private diary, but with the benefit of letting others listen.

So I think I’ll always have a bit of the journalist’s eye, deciding on key word density and internal links that make articles and blogs easier to find in a search engine. Can’t help it. My other health site’s pretty much brainwashed me into doing this! But I’ve learned from other MS bloggers the joy and freedom of letting down some guard and writing from the gut. For such reads, it’s good to start at the MS Carnival of Bloggers homepage, where you will find links to many bloggers and their personal MS stories.

To wrap things up, I like to think of a blog as a loose-leaf notebook, with many pages in chronological order. Now, imagine opening up that notebook on a windy day. You’re maybe trying to remove a page from the binder, and whoa!—- they start flying out everywhere. But think of a person stumbling upon one of those pages and being touched by what you wrote. Another person comes across a tattered page, found on the street many miles away. Blogging is like sending out pages of a private notebook to the wind. No matter what the format (journalistic, personal, ranting, prayerful), the end result is touching a complete stranger’s life and making them feel a connection.

Posted in Blog

MS Med Tysabri Linked to 2 More Cases of PML

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Tysabri, an aggressive treatment for multiple sclerosis, has had a history of infamy. It is associated with causing a rare neurological virus, progressive multifocal leukoencephalopathy, in a handful of patients. After two years back on the market, it has nevertheless helped many patients who do not respond to the traditional disease-modifying meds (Avonex, Betaseron, Copaxone, or Rebif.) For the full story, read Lisa Emrich’s entry about the recent situation (her blog, “Brass and Ivory”, provides insightful information about pharmaceutical corporations and health insurance issues important to those with multiple sclerosis and other chronic health conditions.)

Posted in MS Medications
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