A few things are changing around here. For the past couple of years I’ve been (somewhat) satisfied with being a safe haus frau, writing from home, and having the occasional jaunt out during the week to volunteer or visit with family members/friends. Working from home has been a blessing in terms of keeping me employed part-time (I also receive Social Security benefits, which took 2 1/2 years of scanty employment, complete hardship, and tenacious interactions with the Social Security Administration to receive.) But now I need more. I need an outside, part-time career. For my own sanity.

I’m starting graduate school at the end of August. I’ll be doing an online distance ed Master’s of Social Work— MSW— program and it’ll take between 3 – 4 years, with clinical rotations, to complete. The clinical rotations will be separate from the classes, and they’ll require about 18 hours of in-person work a week. As the turtle, I’ll be very slowly and steadily taking this program one course at a time for 8-week increments pretty much year-round (I WILL get a little time off between 16-week semesters!)

At the same time, I am now making and will continue to make some needed changes within myself to be more than I currently am. Some important tweakings. How can I be of service to anyone if I have unaddressed issues of my own? So a more cohesive Jen. And two of the initial areas I’ll be addressing will be my inner and outer strengths. I’ve found a local yoga studio, the Center for Health and Healing, which will have me work the front desk on Thursdays from 9 – 3pm in exchange for unlimited free yoga classes and 1/2 price massages. It’s finally time to get out and do some yoga! I’m pretty excited and I think the 6-hour commitment each week will help me slowly build my outside work endurance (I’ve been maintaining about 8 hours of weekly sedentary volunteer work thus far.)

I believe in my mind, my heart, and in my soul that I can maintain about 12 – 20 hours of mostly sedentary work each week. No more long hours on my feet as an ultrasound tech. But this is fine with me, as I believe in my mind, my heart, and in my soul that I can be of service as a medical social worker, and now’s the time to begin this new chapter in my life.

Yoga job starts bright and early next Thursday morning…

Back to the beautiful weather here: today’s 80 degrees with little humidity. Might hit up the beach for the remainder of the afternoon… : )

UPDATE: FDA Panel Recommends Approval of Oral Fingolimod for Relapsing MS — If agency follows advice, it would become first oral disease-modifying therapy for MS

Updated June 14, 2010

A U.S. Food and Drug Administration advisory committee today recommended that the agency approve marketing of fingolimod capsules (formerly called Gilenia, Novartis International AG) for the treatment of relapsing multiple sclerosis. If approved, fingolimod would be the first oral disease-modifying therapy for the treatment of MS. While the FDA is not required to follow the recommendations of its advisory committees, it usually does. According to Novartis, the agency is expected to make a final decision about whether to approve the drug in September 2010.

During an all-day meeting held June 10, 2010, the FDA advisory committee reviewed data about the effectiveness and safety of fingolimod, as well as a proposed plan designed to monitor and mitigate risks – called Risk Evaluation Mitigation Strategies (REMS) that would likely be mandated to monitor safety if the agent is approved. The committee also heard public testimony from individuals and patient advocacy groups, including the National MS Society, which testified to the unmet need for more therapies for people with MS.

Among its discussions, the advisory committee recommended that fingolimod be approved at the dose (0.5 mg once daily) recommended by Novartis and that:
• Fingolimod demonstrated substantial evidence of effectiveness for the treatment of relapsing MS to reduce the frequency of clinical relapses and to delay the accumulation of physical disability;
• the safety data currently known justify the drug’s approval, and the FDA should require a post-marketing study that would proactively gather information about adverse events and longer-term safety, the effects on a broader range of people than were included in the trials, and possible complications of taking other medications including steroids along with fingolimod;
• patients should be monitored during the first dose for possible lowering of heart rate and other potential heart effects, and that some assessments for potential adverse events related to eye (especially macular edema) and lung function be required, to an extent to be determined by the FDA;
• the FDA should consider requiring a study to evaluate whether a lower dose would be as effective as the recommended dose, with fewer adverse events;
• this therapy should be approved as a first-line therapy, meaning that patients would be eligible to take fingolimod without having to try an alternative therapy first.

Click here to read the remainder of this article

]]> http://www.msstrength.com/news-about-oral-fingolimod/feed/ 0 http://www.msstrength.com/the-ms-shoppe-sells-cooling-devices/ http://www.msstrength.com/the-ms-shoppe-sells-cooling-devices/#comments Sun, 06 Jun 2010 00:45:01 +0000 Jen http://www.msstrength.com/?p=3920

My buddy Cathy has an online MS store, www.themsshoppe.com, which provides a multitude of cooling items, assistive equipment, books, T-shirts, jewelry, and other novelty items. I love this online store and I’ve bought one of her very popular MS T-shirts myself. I admire Cathy and her tenacity, and I’ve found myself reading her own MS story at Navigating the Journey of MS. Hope you enjoy this shop as much as I do and can utilize the goods that make life with MS a little easier and a bit more fun.

Today’s the second annual World MS Day, where nations bring about awareness and support for multiple sclerosis. For a glimpse of what different countries are doing for the day and ways that you can support the movement, check out WorldMSDay.org. And always bear in mind that awareness should be EVERY day!

I’m becoming accustomed to the ins and outs of Social Security Disability Insurance (or SSDI): I was claimed disabled in January of 2006, I was eligible for benefits starting in July of 2006, and I started receiving compensation in July of 2008 (after a lengthy legal process.) However, I was mid- MS relapse at the time of winning my case and since my husband and I were on shaky financial ground (living pretty much on his moderate income), we decided that I should opt out of my voluntary Medicare coverage that came along with qualifying for SSDI. The monthly cost was small– $110 for Part B medical coverage— and Part A hospitalization coverage was a freebie, but since I couldn’t afford to be on Part D prescription coverage because of my costly injectible MS drug, it seemed like a logical plan to just forego the Medicare Part B coverage and stay with my husband’s company’s extensive group insurance. So this is what we did in 2008, after having to keep the Medicare Part B coverage for a month or two until the lengthy processing could remove me from their list. When I was officially removed, we figured I was in the clear and I’d save $100/month for my Roth IRA contributions. And my husband’s insurance was pricey but very thorough, so there was no need (in our minds) for me to have dual coverage. Case closed? Hardly.

In December of 2009, I had a visit to a satellite emergency room that was a part of our larger local hospital system. When registering I learned that my insurance company knew I was Medicare-eligible. I was asked to submit my Medicare card and even though I no longer carried Part B coverage, I had kept the Part A freebie (why drop free coverage, we thought) so maybe this was considered a “hospitalization” claim.  In a few weeks I received this claim, unpaid, from my insurance company with questioning about “coordination of medical coverage.” I wrote back explaining that I had no Part B coverage, only Part A. Soon after I received the bill again from the hospital with no Medicare payment and a partial insurance company payment. I was supposed to pay the remainder— about $600—- out-of-pocket.  I already knew my insurance provider was supposed to pay the bill and I would only be left with a $50 ER visit copay. What was going on??  I was beginning to feel that this was no Part A claim, but a misunderstanding over a Part B claim.

I phoned my provider and asked why I was being billed for an out-patient ER visit  that didn’t fall under Part A coverage. I reminded them that I had no Part B coverage and that they should resubmit the bill because I had always had just a $50 ER copay in the past.  I was told then and there that I would now be responsible for any “Medicare-eligible” portions of Parts A or B claims, since I was eligible for Medicare, and that the insurance company would “carve out” this amount from their payments. Basically my insurance provider wanted me on Medicare so that Medicare would be my primary and then they would not have to pay the entirety of all my claims.  I was livid and I told them that nowhere in their coverage material (neither in print nor online) was any of this mentioned. They responded that they would send me a letter with all of this information for my convenience. They could not provide any places where this information was made viewable to consumers. I was even more livid, but I figured my best option was to opt back into both Medicare Parts A and B.

Around the same time I received a bill from a care provider that I believed had been payed by my insurance in the summer of 2008.  When I phoned the provider about this, they explained that my insurance company was now renegging on this bill due to what they believed Medicare was responsible for. And since I was technically covered for a brief period by Medicare Part B right after my settlement, the bill was submittable to Medicare.  But instead of my insurance company sending a bill to Medicare after the fact, they simply withheld payment to that provider for a similar charge on someone else’s bill. So no proof that the payment was being rescinded, but an angry provider who now was billing me for their own loss. I was fuming. I was able to get the provider to relent with the bill, since they had no proof and I had proof in 2008 that my insurance DID initially pay. A similar bill came to me soon after and this time I had the provider resubmit the old bill to Medicare and have them get payment themselves. But I worried about how many old bills might be overturned in this way as an effort to get Medicare—or more likely ME— to end up paying. UGH.

Present day: I was just reinstated with Medicare Parts A and B, and even though I’m angry that my health insurance is now $110 more/month for the exact same coverage and will likely be complicated by having dual insurance, I suppose I have thwarted thousands of dollars in unnecessary bills that my original insurance company would continue to send me because I am “Medicare-eligible.” I didn’t get out of paying the $600 ER visit, or a separate $225 doctor’s bill, so I’m in the process of getting them off my plate and maybe this insurance fiasco off of my back.

What to Know Before Opting Out of Medicare

If you become eligible for Social Security Disability Insurance (SSDI) or any variation that qualifies you for Medicare, learn first from your insurance provider— if you already have insurance— whether they will “carve out” , “put aside”, or just plain “NOT PAY” a portion of your medical bills that they believe Medicare should pay, whether you are on Medicare Parts A and B or you wish to opt out. Not all companies do this, but when I contacted the billing company for the hospital, the representative seemed to know all about this Medicare-eligible “carve out” situation and further explained it to me.

Of course it’s frustrating to pay for Medicare insurance if you already have perfectly good coverage through private insurance, but when companies do audits to cut costs, they can learn about your Medicare eligibility and refuse to pay for Medicare-eligible services. It happened to me nearly two years after I thought I was in the clear.

Joan’s Online MS Chat
Friday 14 May, 7:00 – 9:00 pm
Energy Conservation and MS (suggested topic)

How do you manage your energy? Can you share any tips? Have you received guidance from occupational therapists who have helped you to conserve energy? I will share changes that have helped me, and will pass along information from MSAA’s Energy Conservation and MS webcast that is scheduled for May 13.

Of course, we WILL chat about birds. The chat topics are just guidelines, so feel free to bring your questions or topics to discuss. To attend, just CLICK HERE and follow the directions. Newcomers are always welcome and you don’t have to live in the Delaware area to join.

• If you are uncomfortable typing, you are still welcome to come and watch the conversation.
• If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.

Hope to see you in the room!

Joan

The first oral disease-modifying MS drug fingolimod (trade name Gilenia) will be coming up against the U.S. Food and Drug Administration’s advisory panel for recommendation. The date is set for June 10th and if it is approved, the drug could be marketed to patients by year’s end.  For more information about Gilenia’s benefits and risks, visit the National Multiple Sclerosis Society’s website.

MS LifeLines^® announces special collaboration with Redbook magazine on Who’s Your LifeLine? program

MS LifeLines^® is excited to announce that the Who’s Your LifeLine? program is collaborating with Redbook magazine to feature an upcoming LifeLine Spotlight in the October print issue.

Who’s Your LifeLine? is an online recognition program for people in the multiple sclerosis (MS) community, to recognize others who have made positive differences in their lives.  Maybe you were recently inspired by someone at a local MS event, or you find inspiration every day from someone close to you impacted by MS.  Now you can nominate your LifeLine and have a chance to be featured in Redbook magazine. Nominations received between now and June 24^th will be reviewed for the October issue.

Everyone in the MS community is encouraged to nominate the person or people who most inspire them.  Each submission will be reviewed by a distinguished panel, and selected stories will be featured as a Who’s Your LifeLine? spotlight on mslifelines.com.  Don’t wait – nominate your “lifeline” today!

For detailed program guidelines, visit www.mslifelines.com/redbook

***MS LifeLines is an educational support service for people living with MS and their families.  The program is sponsored by EMD Serono, Inc. and Pfizer Inc.

MS Strength.com reaches over $100 in ad revenue AGAIN and procedes will be donated to the National MS Society’s scholarship fund

It’s great to be able to donate again to the scholarship program, and so the fundraising thermometer will again climb until the next $100 is reached. Thanks to all who support the site!

I’m falling into a pleasant groove here with some library and hospital volunteer work getting me out of the house and some freelance writing ventures keeping me employed and satisfied. I’m also in the process of applying for the Master’s of Social Work degree (MSW) through a couple of universities. My primary interest is in a college in Maine that offers an accredited– VERY RARE– distance education program with a part-time, in-person clinical component. I think I can handle this and conserve my energy until the final clinical rotation.

So things have been peaceful, steady, and sane here for the past few months. Whew!!

This past Sunday my husband Bill and I got out and volunteered at our local MS walk. We’ve been doing this for four years now, and the vibes and the camaraderie are always upbeat and supportive. I like to help run the registration table and assist participants with forms and donations and Bill finds himself getting shirts for the walkers who raise a certain level of money.

This year I also had the opportunity to meet a newly-diagnosed girl (she appeared to be in her twenties) who had a rough first attack. Her mom sat next to me at the registration table and she came over with her small walking group to talk. Jenni wasn’t participating in the walk herself because she was rebounding from leg paralysis and was happy to be out of a wheelchair and using a cane. Both mom and daughter marveled that I “looked so good” for someone who had battled MS for nearly 12 years. I had to confide that not everyone has a bad first attack and I was one of many patients with a LONNNNNNNG and winding road to the proper diagnosis. Even though Jenni and I had different stories, we both had similar symptoms– as do many MSers– and we related to one another. I then invited her to attend the next local in-person support group in our area. A guy from high school got me to it, and I wanted to “pay it forward” and get her to consider. So Jenni and I may hopefully meet again.

What a great day yesterday! I ventured down to Delaware to meet Joan (from A Short in the Cord and Joan’s MS Chat Room), Lisa (from Brass and Ivory, MS Central, and The Carnival of MS Bloggers), and Sonia (one of Joan’s local MS buddies and a fellow chatter.)

Woo Hoo!!…… It was awesome to meet fellow MS writers and chatters in person, after nearly two years of online interactions. And we found that we had TONS to TALK ABOUT in person. Joan was a little concerned that we might have nothing to say when actually brought together in one room, but not so. We had lots of laughs, we shared more information, we learned more deeply about one another’s lives, and we also talked about NON-MS stuff!

An MS issue we did discuss: what did we feel were our greatest multiple sclerosis symptoms and did they greatly affect us? Joan and Sonia mentioned their stopped-in-their-tracks fatigue which altered both of their career paths. I mentioned my own embarrassing and VERY annoying bladder and bowel urgencies, and Lisa explained her right leg weakness and the compounding rheumatoid arthritis hand symptoms (although it was good to hear that her current RA med is helping BOTH of her conditions.)

We enjoyed food and some wine and we gazed at Joan’s adorable backyard with bird houses, feeders, and many visitors. Joan’s home actually backs to a water runoff area that has filled in since she moved there, giving her a serene small pond that she shares with other neighbors. SO COOL!…..We even met Joan’s husband Tedd and I got some better directions home, since I got thrown off course with MapQuest’s ambiguous information (SIGH…)

All in all: what a GREAT TIME!…. Thanks for such a splendid day, ladies, and I can’t wait to do it again soon. We hope to continue and make this a tradition, involving more MS ladies who’d like to gather and celebrate good food and good friendships and LIFE. We all ROCK n’ ROLL!……

Some of the current MS fundraisers sponsored by the National MS Society (U.S.) include the Walk MS event and the Bike MS event, which are both coming into full swing. Both raise many thousands of dollars towards MS Society programs and MS research. For the past several years I’ve volunteered at both of the events: I’m not much of a fundraiser but I definitely can donate my time to help the local events run smoothly. To find out about donating, fundraising, or volunteering for either of these national events visit:

• Walk MS (fellow MS writer Nadja is featured in the campaign)
• Bike MS

There is also a current survey in which the NMSS asks for MS writers’ / bloggers’ input about online communications and information. If you are an online writer, feel free to have your say:

• MS: Surviving the Information Age