Friday, April 30, 2010

Gone Fishin'

As I am now traveling, I will be away from the computer. Please hold down the fort while I'm gone (fishin') and I will see you soon. In the meantime, random posts may or may not show up. :)

Thursday, April 29, 2010

But That Looks So Good!

In the recent past, I was confronted with a difficult temptation. It might not be a big deal for others, but for me it was the first time since making the commitment to eat better and lose weight that I had access to unlimited supplies of tasty sweet foods.

Each spring, my horn students perform in the annual Solo & Ensemble Festival, an event at which I accompany others too. During the festival, which occurs all day on a Saturday, I am able to hang out in the ‘Directors and Judges’ lounge where food stuffs are available. The host school of the event will feed the judges breakfast at the beginning of the day and later feed lunch to the judges and directors (and a few piano players).

After my first performance at 8:24am, I had 30 minutes to relax so I went to the lounge. There it was - a platter full of mini cinnamon rolls sitting next to two other platters of baked goods. I fixed myself a coffee and ate one roll. Then I had a 2nd roll.

It was later that I looked up the nutritional value of two mini rolls. 242 calories, 11g fat, 32g carbs, 4g protein. Geesh, that wasn’t worth it. I felt guilty, although they did taste good.

Read this post in its entirety:

Avoiding Temptations: But That Looks So Good!

Wednesday, April 28, 2010


Monday evening an accident occurred here at chez Lisa. It was horrid really. As I was about to come upstairs (from my music studio to the main level of the house), I was going to pick up some dry laundry.

I was carrying my MacBook at the time and thus set it down. Where I placed it was on top of a large ice chest cooler which was sitting on top of another container of some sort. Although I usually set my laptop down on a step of the stairs, I didn't think much of placing on this apparently level surface.

Just as I was about to enter the laundry room (maybe 8 feet away), I heard a crash. At first I wondered what large object one of my cats might have knocked over, or if I had inadvertently set something in motion without feeling it.

NO!!!!!!! I saw my laptop on the floor. It had fallen from its (not so safe) perch on the ice chest. I opened it up and was met with a shattered LCD screen. DAMN IT!!!!

My supper break was used up with tears, sick stomach feelings, calls to the Apple Store, and a failed attempt to hook my computer up to the TV as a substitute display monitor. I had several files open and in various stages of progress. I had several posts stored for future and current HealthCentral pieces. Basically I had a lot of stuff which I needed off my computer pronto.

I ended my last lesson early and high-tailed it to the local Apple Store: 1) to see if they could hook my computer up to a screen and let me see if I could download essential files to work with on my mother's computer; 2) to see what it would take to repair my computer. They assigned me an appointment the following day to have someone assess the damage. Then someone did set me up with a monitor and I was able to use my computer until just before the store closed.

Since I use a Mac (and the standard word program, Pages), it seemed that my mother's PC (with Microsoft Office) didn't want to recognize the files I downloaded afterall. I needed a converter of some sort. But I did notice that the pdf files were just fine.

So the next morning I went back up to the Apple Store to ask to use the monitor again. One cool thing with Pages and Numbers is that you can export your files into pdfs. So this is what I did with the absolutely necessary, time-sensitive files and saved them to my flash drive to use later. Then my appointment time came, and I worked with the very same guy who helped me with using the monitor on both occasions, so he already knew what the problem was. :)

I needed a new LCD screen. Since my MacBook is an older model, they may or may not have had one available. They did have ONE in stock. He told me the price and asked if it was worth it to me. YES!! Then he mentioned using an authorized repair shop who could probably do it for less.

I didn't want to mess about. I wanted my computer back ASAP as I was planning to take it on a trip I am leaving for tomorrow (Thursday) and this discussion was occurring on Tuesday. He said that it could be ready before they closed at 9:30PM. Wow, that's great.

Turns out that my computer was ready before my supper break on Tuesday. When I got the message, I high-tailed it over to the store to pick it up. A different person asked me how the damage happened and I mentioned a drop from decent height. He gave me a heads-up that sometime after trauma such as that, the hard-drive may begin to have problems. Back up all your important files, especially photos and such.

I need to spend some time doing just that in the near future. But I was thrilled and amazed that I got my computer back in good shape only 24 hours after the accident. Such a relief. Of course it cost several pretty pennies, but I use this thing for EVERYTHING!! It is part of my business, especially with all the writing I've been doing, and part of my lifeline to the online community.

Now I just need to get off this computer and go pack for my trip. It should be a good one, involving a flight over the big blue ocean. I'll have to tell you about it later.

Oh, and I need to figure out why colors look different now on my screen. Some setting must have been changed. Not that they are bad, but just different and I kind of liked how they were before. A project for another time, I suppose.

Tuesday, April 27, 2010

Multiple Sclerosis Resources in the United KIngdom

Looking into MS organizations and resources in the United Kingdom, Iʼve discovered that there are many services available to patients with MS. As this is MS Week in the UK, we should discuss various MS organizations in that corner of the world.

Multiple Sclerosis Society of the United Kingdom

The MS Society is the UK's largest charity for people affected by multiple sclerosis (MS) - about 100,000 people in the UK. As a charity "we aim to support and relieve people affected by MS, to encourage people affected by MS to attain their full potential by improving their conditions of life, and to promote and publish results from research into MS and allied conditions."

Multiple Sclerosis Resource Centre

The Multiple Sclerosis Resource Centre (MSRC) is a proactive and innovative charity, passionately committed to supporting anyone affected by multiple sclerosis through access to unbiased information and advice. Our approach is to encourage individuals to make choices that are appropriate to their daily lives, empowering them to maximize their potential.

Multiple Sclerosis Trust (MS Trust)

The MS Trust is a charity which works with and for people in the UK with MS. Our vision is to enable people with MS to live their lives to the full by providing:

  • Information that is tailored to what people want to know
  • Education for heath professionals about what people with MS need
  • Research into better management of MS
  • Support for anyone affected by MS
Read this post in its entirety:

MS Organizations in the United Kingdom

Sunday, April 25, 2010

Insurance Coverage, Social Media, Advocacy Orgs, and Pharma Sponsorship

I've been contemplating something in recent days. Has my perception and opinion of the healthcare industry, specifically Big Pharma, changed since I've changed medications?

Many of you may not know, but the reason I started this blog was to contribute my voice and personal experience to the ongoing discussion of health policy, health insurance, Big Pharma, leaky safety nets, and prescription costs.

Previous Experience

For the years 2005-2009, I lived under the oppressed situation of having to force myself into earning poverty level (200%) income in order to get the financial assistance I needed to obtain Copaxone from NORD (National Organization for Rare Disorders). Teva funds the assistance program and NORD administers it.

Also, I had to insure that I didn't have a significant level of liquid assets in the bank. All aspects of my resources, earnings, and expenses were scrutinized...even down to the detail of NORD adding back the cost of a black concert outfit into my earnings (which were verified by submitting my 1040 Federal Tax form) because they said "clothing should not be a business expense."

How's that for ridiculous? What really infuriated me was that I was penalized for being debt-free. No mortgage, no student loans, no car payments...and I live in an area where a typical salary for a mid-level job is closer to 800% Federal Poverty Level.

Unfortunately, NMSS, MSAA, MSF were each ineffectual to help me figure out my situation and find a solution. Talking with a few patients online (on a pharma-sponsored message board), letting my neuro nurse know my need, asking for help from my local union office, and finding one person who located a small program in my county helped me navigate those difficult months without any assistance.

New Experience

In contrast, this past winter I experienced something I've never experienced before. My insurance company fully covered a $17,500 Rituxan infusion at their allowed rate of $11,300. I didn't even receive a bill from the hospital for that particular procedure.

How did that happen? I had satisfied my $2500 out-of-pocket limit (for covered services) from insurance for 2009 with the previous $17,500 Rituxan infusion. Wow, that was kinda cool!!

And to make things even better, the makers of Rituxan offer a copay assistance program which is not income based. They will pay the patient's out-of-pocket expense for the cost of Rituxan up to a $4000 limit each year for eligible patients.

Although the program wasn't as easy to use as I had hoped, eventually they did pay all but $105 of my copay for the first infusion. They paid $978 directly to the hospital after we figured out that insurance allowed 65% of all charges, straight across each ine item, including charges for the drug itself. It was rather difficult to satisfy the program's need for proof of charges and allowed rates because neither the hospital nor the EOB showed such detail (for each line item).

Out-of-Pocket Limits Fulfilled

Next month I'll be receiving another round of Rituxan infusions. I've decided to try a different hospital out-patient center, mostly for comparison. I can only assume right now that the charges will be similar.

If so, I will have practically fulfilled my out-of-pocket limit for the year and the vast majority of that (80%) will have been paid for by the copay assistance program after two infusions. This is such a huge weight lifted off my shoulders!!

I still have to pinch myself to believe it to be true. The difference in my financial experience between the two biologic drugs I've used, Copaxone and Rituxan, is simply because one is covered under my prescription coverage and the other under major medical...and the structure of the financial assistance programs.

Changes in Gut Reactions

Not having that burden does make me feel somewhat more friendly to the healthcare industry in general, including pharmaceutical companies. When a program is set up right it makes all the difference in the world.

Perhaps this is one reason why I might be willing to share my experiences and suggestions to companies who might actually want to listen and learn from them.

Sharing Knowledge and Experience

However, I've done just that in different ways already. In the summer of 2008, I blogged about Acorda and Fampridine. The CEO/President wanted to talk to me so we spoke for 2.5 hours on the phone. Now that Fampridine is finally approved and marketed as Ampyra, I'd like to think that something I said about assistance programs might have contributed to the program Acorda has now set in place through which many patients are benefiting.

In October 2008, I spoke about blogging and social media usage by patients at a communications conference for Johnson & Johnson. I had not presented at a program such as this before and didn't have powerpoint slides ready, so I used my blog and a live internet connection to illustrate my talk in real time. The convention took place in Orlando and J&J provided travel and lodging, plus an honorarium afterwards.

Perhaps this was ok because J&J doesn't produce any MS medications?

MS Community and Communications

In September 2009, I lent my opinions and observations to the National MS Society to discuss what they could do to improve their interactions with the online MS community. We discussed many aspects of what patients are already doing, what NMSS is not doing currently, and what they could be doing.

While I was at the NYC office, I shared many more opinions and experiences which others have discussed online, including the frustration that NMSS emails to MS patients always include a request for donations. Persons on the panel seemed genuinely surprised that this was an issue. ?!!

Being the ONLY person in the room who actually had MS was quite an experience. The others learned things which surprised them and I realized that we really need to be discussing issues with those organizations and companies who are supposed to be helping us and providing services in some way.

NMSS paid for my travel from DC to NYC by train and taxi (approx. $300) and dinner after the meeting.

Making a Difference

How many times has someone in the MS community expressed the opinion that - "they should talk to us and find out what we need or want!!" or "that website looks pretty but it doesn't really offer anything new or useful to help us!" or "they should come talk to US and learn what patients are doing already or what we want!"

At the NMSS meeting, I told the other panelists that patients really do want to interact with the doctors and scientists involved in research. We want to know more in-depth details. We'd like to have our questions answered. We also want programs which would make more of a difference in our day-to-day lives.

Adding to the Discussion

At the time I asked what the NMSS thoughts were on the CCSVI theory (which had not been highlighted in Canadian television just yet). At that time the topic hadn't hit the broader MS community, but only a smaller group who hang out at the This Is MS forum. I was met with blank looks and surprised responses. I gave them a heads-up that increased interest might be coming.

Later someone suggested that I was an unusual patient, an exception, one who was more tuned-in to current news and obscure science. My response was that many of us are tuned-in and I'm not THAT unusual.

I'd like to think that the webforum NMSS hosted a few weeks ago including Dr. Zamboni and others was designed with the understanding that MS patients really do want access to information and to have equal contribution to the discussion. I was impressed that NMSS opened up an opportunity for patients to submit questions which were then addressed in the online forum. Our questions were given equal weight to those of reporters from Medscape, WebMD, or other health resources.

That's definitely progress!!

Social Media and Patients

For this coming October, I've been invited to contribute to a Patient Panel at the 2nd Annual Medblogger Conference in Las Vegas at Blog World/New Media Expo 2010. I don't have a specific topic just yet, but you can bet that the experience and viewpoint of MS bloggers and the benefit of our community will be shared. I haven't asked yet, but I imagine that my expenses may be paid by the sponsors of the Medblogger Track.

Social Media and Sponsorship

There has been a great deal of discussion surrounding how pharma might be able to better engage (and serve) patients in various social media situations. Some pharma companies are sponsoring unbranded websites featuring real patients such as the group of bloggers who are contributing videos and blogs at

I like to think that by sharing our thoughts and experiences, just as we do on our personal blogs, we will help patients who are looking for real patient experiences and stories. Personally, I don't sugarcoated stuff and really talk straight from the heart. It's the only way I know.

Advocacy Groups, Pharma, and "Social Media"

Then there are projects which are modestly interactive such as We Keep Moving which was initiated by National MS Society with the support of a pharma company. Each story is uplifting and inspiring, it's true. But they are stories as told by a production crew. Is that truly social media?

Fringe Benefits

On a related thought, I was thinking about the services and events which are offered by NMSS or pharma companies. Those presentations where a speaker is brought in and lunch is provided. Or the workshops at which pharma companies bring their tchotchies and we MS patients seem to greedily pick up pens, note pads, lip balm, yoga mats, lotion, hand sanitizers, DVDs, etc.

Are we feeding at the big pharma trough? Or do we feel that our medications cost so much that we are entitled to these fringe benefits?

Do we even want these items? This brings me back to the question - What do we want? How will pharma companies or NMSS know what we want?

If we think that companies and advocacy organizations will know what we truly want just by randomly reading our blogs, tweets, or message boards, then I believe we are mistaken. At least that's my opinion at this time and I reserve the right to change my mind at any time. :)

What is your opinion?

Thursday, April 22, 2010

Carnival of MS Bloggers #60

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

SPMS, Spring, Extraordinary Lives

Secondary Progressive MS: What Your Doctor Won't Tell You
by Diane J Standiford of A Stellarlife

Ok, 1.) Approx. 90% of people with relapsing/remitting multiple sclerosis will become a person with secondary progressive MS. That means YOU, unless you are in the lucky 10%. Since most people start with relapsing/remitting MS, YOU, like ME will join the secondary progressive club one day. No matter what drug you have been sold on, 90% of you will progress and become disabled. Now, take a deep breath. Rejoice that you do not have primary progressive MS. Rejoice that you will have RR for about 20 years after diagnosis. Rejoice that you were able to walk and stand up to at least 15 years after diagnosis. Rejoice that you could still hold a job, start a family, and hold onto that hope that you were the 10%. If in those 20 years you ONLY had MS to deal with and no other diseases or conditions---rejoice. Many of your peers were not so lucky. No doctor knows how much any drug slows the natural progression of MS (not if they do 1 million MRIs), OR if it has slowed your natural progression AT ALL.

All the King's scientists and all the King's doctors can't put the MS puzzle together yet.

NOW! That is the bad news. The good news is very good.

2.) Once you have the secondary progressive diagnosis, you will probably stop having new exacerbations. If you never had bladder problems, you probably never will. Cool, huh? I think so. There is now less unpredictability in your life. If your left leg is bad, it will stay bad or slowly get worse---YOU KNOW WHAT TO FOCUS ON!! That is why I can't say it enough, what I wish someone had told me, start now if you are in RR, to work on your relapsing areas. Maybe your right hand will remit and be normal for the rest of your life, but why gamble? NINETY PERCENT

I was told that how I was doing after 5 years would predict my course. At 5 years I was doing GREAT! I was driving, shooting hoops, working 40+ hours a week, WOOT. But, the doctor and common MS knowledge was wrong. By 13 years I was pretty much secondary progressive. Normal MS progression. Today, with all the ways and all the push to diagnose sooner, get you on an MS drug sooner, stats will show that people will go longer years before they become secondary progressive---you do the math---smoke and mirrors. I would have been diagnosed with MS 8 years sooner. I would have gone on the new drugs sooner and been told "LOOK how well you are doing thanks to this drug!" By the age of 53, I would be right where I am. (Except with the added stress of having MS for 8 more years, doctor appts., high drug costs, and all the anxiety I read on the blogs of the newly diagnosed.

Here is some more doctors won't tell you because they don't know---you can improve your functioning. Just don't ever give up on your body or brain and don't let yourself be labeled with duct tape as "Secondary Progressive." Don't rest just because "why bother?" Bother. Bother because you are still alive and something of your brain and body works great. Seek that which makes you laugh. Breathe deeply every day. Make breathing an exercise. Get your diet together, toss the junk food, corn syrup, additives, sodas, cigarettes, all those evil doers.

Here is something else your doctor won't tell you: plan now to live with disability. If your MS is benign--woo hoo! If it follows the NINETY PERCENT , you are prepared. Now, I have heard that there are still crazy doctors out there who tell people just diagnosed to quit working and buy a wheel chair---AARRGGH That is worse than pretending you will never need a wheelchair, staying active as long as you can is the best drug. You have possibly twenty glorious years before you will need a wheelchair. And please don't feel guilt if you want one before 15 or 20 years, these years are not written in stone. Learn to listen to your body. It will speak loud and clear. (If you don't believe me, hit your thumb with a hammer.)

Why do so many neurologists not tell you about the true and time-proven state of MS? I can guess many reasons, but none are good excuses. Five days ago I played the piano. I played the piano with both hands. Thank goodness I had a friend with me to witness it or no one would have believed it---INCLUDING ME! When I imagine what it took for my brain to do that and my deformed fingers---AMAZING.

Reinvent YOU. There are so many activities I have been unable to do now, but many I never considered doing, and life goes on. Modern technology is a wonder boost for people with disabilities. Computers, the doors to the world, can use voice recognition to operate. Audio books can take you to more worlds. If you have saved enough money or have long term care insurance, you can buy "people" to help you; if you do not have either of those then the good old U.S. of A. is full of organizations that will find a way for you to get the help you need. There are also many people who will love to help you. Seek them now, familarize yourself now, BEFORE you are duct taped! Talk, talk, talk, to your family and friends about the fact, FACT, that MS is a chronic, progressive disease. My friends and family (including co-workers) were prepared for what happened to me and they were there to help me every inch of the way. (Well, when I say family, I mean my partner, she has been my only family as we think of family, for many years. I had to reinvent a new "family.")

What you won't be told is that you will most likely go into the secondary progressive state and you can survive it. It is even possible to do amazing things. Don't be afraid.

***I am no doctor. I am a woman living with secondary MS for 6 years. I was DX MS in 1990. I took Copaxone from 1997 to 2005. Seek professional advice and do your own research too. Because MS can cause different problems in each of us, no suggestion will fit everyone. But, after reading many MS blogs, I see many more similarities than differences. Most importantly: Be unafraid, you are not alone.***

Feeling Groovy 
by Maryann of Azoyizes and MS

Yesterday, Arnie went to a Civil War gathering outside of Appomattox, VA, so Monty and I had the day to ourselves. I cleaned out one more of my little gardens and got the soil ready to plant in May. In the afternoon, I took Monty for a walk. It's a little hard on my own, but we managed. Then, we came home and I opened all the windows because it was 70 degrees. Finally, I opened an ice-cold beer, and sat and read while Monty took a nap.

Friday, we had Zipper over for the day. Zipper is a Saint Francis career-change dog. She was being fostered by Monty's foster family and hurt her leg, requiring surgery. That meant that she could never be a service dog. So, Kim adopted her. Monty and Zipper lived together for over a year while he was going through training. They get along great, still. We took them for a walk, played ball, and they chased each other around the yard. Since it worked so well, we're going to make it a regular thing.

I got a call from Nikki, the advertising director at SF. She said that since Arnie and I do so much for the organization, they want us to go to Putting on the Dog as their guests. This is the largest fundraiser SF has, and I was thrilled to be invited.

Today, I made Monty cookies, and then we took him for a walk. Cut it short though, because today it's 80 degrees without a breeze. Way to hot for me with MS and Monty in black fur to be out walking, not to mention Arnie who is just three weeks out from chemotherapy!

We have our lawnmower in the shop for repairs. The yard was looking awful, so Arnie asked our neighbor if I could borrow his riding mower. Ten minutes later, Jerry was out mowing our yard! I must point out that Jerry is two months out from a heart attack and open heart surgery, and two weeks out from hernia surgery. Amazing guy.

We had a wonderful Passover in NJ. Our son and one grandson flew in for the occasion. The weather was beautiful, and we all had a wonderful time. My BIL and SIL went with me to see Clash of the Titans in 3D. I loved it! It's been years since I've been to the movies!

My Daffodils are spent, but my tulips (see picture) are still beautiful. Our little Chinese Fern tree is covered in leaves. I worried about it surviving the winter, it's so small. I think all the snow we had acted as a ground saturation, and helped all the plants. Bye for now.

The Extraordinary Life
by Dawn from AnonyMS

Did you ever feel as though your life were meant to be extraordinary?

That something special was going to happen in your future? A belief that nags at you, somewhere beneath the skin, someplace you can’t scratch?

As a child, you blew dandelions seeds across the lawn, watching one puff rise higher than the others, hoping it was the seed that would carry your wish to whomever made these things come true, never knowing it sprouted, days later, as another dandelion in the backyard.

Maybe you dreamed of becoming a doctor. Or a lawyer. Or maybe those were never your dreams at all, forced upon you by parents trapped in assembly line jobs.

A movie star, perhaps? Was that what you wanted? Singer? Musician? Winning awards? Topping the charts?

Did you want to be a CEO? Invent something the world could not live without?

Perhaps, over time, your wants became simpler, like a good cup of coffee every morning with your spouse, predictable, comfortable in your well-worn slippers. A house with a fireplace. Now that would be cozy. An outdoor pool. Plus someone to take care of it. A nice car, but not a minivan. Two or three children with scrubbed-clean faces and good grades.
Yes, you slathered Calamine lotion on your skin and spread Scott’s turf builder on the grass.

Maybe ordinary could be extraordinary to you.
Or maybe you’re like me. You thought you would do something extraordinary or be something extraordinary, but you never knew just what extraordinary was. It had no definition. It was floating out there, somewhere, waiting to be caught.

But now I know.
I have Multiple Sclerosis.

So this is how it’s going to be, huh, life? Now I have to be extraordinarily brave and strong to overcome a lifelong, incurable disease? Great. This wasn’t the extraordinary that I had been hoping for.

But if you’re gonna give me a lawn full of dandelions, life, then watch me clip ‘em and stick ‘em in water. They’ll keep growing back, I know, but hell, I’ve got a cupboard full of crystal vases that need filling.

This concludes the 60th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 6, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 4, 2010.

Thank you.
Comments for this post.

Wednesday, April 21, 2010

Making Sense of RA Biologic Medications

Patients living with rheumatoid arthritis have many choices when it comes to medication designed to prevent inflammation and further joint damage. In this post we will be discussing the biologic drugs, or “biologics.” Protein-based and derived from living cells cultured in a laboratory, biologics target specific parts of the immune system rather than the entire immune system as do the traditional systemic drugs (ie. methotrexate, sulfasalazine, cyclosporine).

The biologics (often monoclonal antibodies) act by blocking the action of a specific type of immune cell (T-cell or B-cell lymphocytes) or by blocking proteins in the immune system such as interleukin-1, interleukin-6, or tumor necrosis factor-alpha (TNF-alpha). These cells and proteins play major roles in the development of inflammatory autoimmune diseases such as rheumatoid arthritis.

As an RA patient who also has multiple sclerosis (MS), I cannot use one of the anti-TNF drugs as they are contraindicated in patients with known demyelinating diseases such as MS. Because of this I had not thoroughly researched them before, but with the approvals of Cimzia, Simponi and Actemra, it seems to be a good time to learn how the drugs compare.

Read this post in its entirety:

Biologic Medications for RA: The Big Picture

(This is the first post in a 3-part series.)

Preparing for the Good Ol' Summertime with MS

As summer approaches in the Northern Hemisphere, so does the heat and humidity. For many of us who live with multiple sclerosis, the summer brings with it difficulties due to heat-sensitivity. When the body becomes over-heated (regardless of the cause), it can cause a pseudoexacerbation or temporary worsening of symptoms. An elevation in core body temperature of only one-quarter to one-half degree can impair the ability of demyelinated nerves to conduct electrical impulses, commonly causing a feeling of weakness, fatigue, visual disturbances, or other symptoms.

It is important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity (demyelination or damage to the nerves themselves). Pseudoexacerbations are an uncovering of older exacerbations and the symptoms are generally reversed when the source of increased temperature is removed.

I am heat-sensitive and often make use of a variety of cooling techniques to deal with the increased difficult functioning in the summer.

Read this post in its entirety:

Keep Your Cool: Strategies and Equipment to Help You This Summer

Tuesday, April 20, 2010

Prayers for BobRobert and Steve

BobRobert and Steve

Steve began his blog near the beginning of 2009 and I have been following his journey as partner, spouse, and caregiver to BobRobert. BobRobert was diagnosed only 3 short years ago and for almost half of the time since then, Steve has been sharing stories of their life and his experiences with the MS community.

Here is his original telling of their MS story (posted in November 2008 as a comment on HealthCentral) and again on his blog in February 2009.
First Year with PPMS
Friday, November 28, 2008 at 05:52 PM

My partner was diagnosed with MS in April 2007 at the age of 46. He had been experiencing tingling in the hands, bladder control issues, and short periods (1-2 hours) where his legs would just give out without notice. Within months, it became clear he had one of the most aggressive forms of MS anyone had ever seen.

He started using a cane in July. A walker in September. In October, as we boarded a flight to start a 2 week vacation celebrating our 15th anniversary, he took his last steps. And as he lost the use of his legs, they took on a life of their own, constantly jumping with painful spasms. His November MRIs were a complete bust due to all of the movement. By April 2008, the spasms had left his legs and started in his arms.

In those early days, I remember the bladder control issues as being a really difficult challenge. We didn't discover condom catheters until after that 2 week vacation, and instead relied on a hand-held urinal for emergency situations. We learned to always scan an unfamiliar location for either a wheelchair accessible rest room, or a secluded corner where he could use the urinal.

October also brought the first complaints of occasional abdominal pain. We initially mistook the pain for neuropathy. Big mistake. Two days before Thanksgiving, the pain had become unbearable and a fever started to spike. I wheeled him down to the emergency room, where they drained 2 liters of urine from his bladder. Who would have thought that a bladder that leaked so frequently could at the same time be holding on to so much? They kept him overnight to treat an acute bladder infection, and then for another 2 weeks of rehab so that he could learn how to use an intermittent catheter and gain some upper body strength.

When he came home from the hospital in December, the weakness in his legs had spread to his trunk, requiring the addition of a hospital bed, hoyer lift, and commode to our apartment. We didn't have an accessible shower or tub, so bed baths became the routine. But the intermittent catheterization was not keeping his bladder under control, so in January he had suprapubic cystotomy surgery. That was probably the happiest day he had had since they drained the 2 liters.

Then there was the neuropathy that started in July. His feet were either burning or freezing, with periods of feeling like he was walking on glass. By the time he became wheelchair bound, the pain had spread to his legs and rear. [Conventional and alternative neuropathy treatments provided limited relief.]

February through April 2008 brought a plateau to the symptoms. Things weren't getting better, but at least they weren't getting worse.

One of the biggest frustrations with PPMS has been the lack of any recommendable course of treatment. With RRMS, you have your interferons and Copaxone, which reduce the frequency and severity of attacks. But none of these have proven to help him with his one big, neverending attack.

I almost wish this wasn't classified as MS. Everyone seems to know somebody who has MS, but we've yet to find anybody with MS who can commiserate with what we've been going through. The closest we've found was a social worker we met in January who had worked with a client with the same type of symptom progression. She was reluctant to give any details, but we were starving for any kind of insight into what the future may hold, so we insisted. She told us that the client's decline went on for 2 years before he passed away from respiratory failure. That information oddly gave us some comfort.
Steve and BobRobert were married in October 1992 and have been together for almost 20 years. Unfortunately for the last 3 of those years, MS has aggressively asserted itself into their lives.

With the recommendation of his neurologist, BobRobert has been under hospice care since January. But it is just this week that the decision was made to keep BobRobert comfortable and to allow his body to rest.

BobRobert was transferred to Christopher House and he and Steve are surrounded by family and friends. I hope that this brings comfort to them both as BobRobert is dying.

Please keep them both in your thoughts and prayers, and perhaps stop by Steve's blog to leave a kind word. Although we have never met, my heart goes out to them right now.

Big hugs to you both!!

Sunday, April 18, 2010

Folic Acid: Mouth Sores vs. Cancer Risk

Ouch. Last Wednesday or Thursday, I noticed that I must have burned the roof of my mouth. I didn't remember eating anything so hot that it could singe the skin, but the tenderness in one spot let me know that I must have.

Friday it still hadn't really healed over. In fact, it seemed to be worse. Saturday afternoon, I realized that I had another tender spot in my mouth and a slight metallic taste was developing. Sometime in the afternoon, I realized what was really going on.

I have developed some mouth sores. Ouch and yuck. Why are these showing up now?

Last month when I visited with my rheumatologist, she asked if I had ever developed mouth sores before. No, I haven't. Why did she ask this? I take methotrexate.

Methotrexate is used to treat different types of cancer, but it is also used to treat rheumatoid arthritis. Methotrexate is an antimetabolite and antifolate drug which inhibits unusal rapid cell growth.

One of the many possible side effects of methotrexate is mouth ulcers, or mouth sores. To help prevent this and other side effects, it is customary to take supplementary folic acid which comes in 400mcg (otc) or 1mg (prescription). I had been taking 1.2mg daily for the past three years.

Based on research published in the Journal of the American Medical Association last fall (and other research studies), my rheumatologist suggested that I stop taking folic acid. Why, do you ask?

High doses of folic acid have been associated with an increased risk of developing lung cancer. The risk remains small, but an increase is an increase. Since I had not experienced many of the nasty side effects of methotrexate, my doctor simply wanted me to stop the folic acid, which may or may not have been helping to alleviate those potential side effects.

Well, one month off of the daily supplementation and I am beginning to develop mouth problems. So on the way home from a busy day accompanying several students at solo festival, I stopped at the grocery store.

My shopping list was short: Folic Acid!!

I immediately took four tablets as soon as I got home and will do so daily until my mouth feels good again. Hopefully at that point I can decrease the amount I need to keep the sores away without increasing the risk of cancer, especially since cancer has run in my family.

Hopefully, it won't be too long before my mouth is in tip top shape once again. :)

Friday, April 16, 2010

Festival Practices and Crazy Schedules

The past week or so has become crazy around here!! Tomorrow is the first of two Solo and Ensemble Festival events in the area and I am accompanying many different students as they play their solos.

What this means is that I have had to practice with many different students in preparation for their performances. I am beyond exhausted and stressed.

My hands have been getting tired, but thankfully, they are holding up pretty well. My right eye is tending to the blurry side, but the left eye is staying strong.

Two weeks ago, my eye was so blurry before I went to bed that I knew if it were as blurry in the morning, I would have been going to the ER to get hooked up with some Solumedrol. It didn't seem as blurry that next morning.

But it has been going in and out, randomly, from day to day. Can I get away without calling this a mild case of optic neuritis? I don't have time for steroids. Period.

Tomorrow, my day starts at 8am at a school 30-40 minutes from my own home. Then I have to get to a different school to play for two other kids. A driving lunch break back to the original school to accompany another dozen kids from 1:00-3:30pm.

Trust me. This is a crazy schedule. I'm already exhausted just thinking about it. Fortunately, it hasn't been extraordinarily hot lately, so hopefully the schools won't be heat saunas.

I've got my fingers crossed that everything goes smoothly. Wish me luck.

In about 5 minutes, I'm going to go watch one of my horn students perform in a school production of Grease. She is a "pink lady." Should be a nice diversion. :)

Til later, be well.

Wednesday, April 14, 2010

"I choose my own..."

Recently I was contemplating (now don't get me thinking).

What if... the internet and blogs went CRAZY and started linking to random things, and we had no control over it.

What if... those links went to sources that we've never read, but it appears we are vouching for the validity and relevance of the material.

What if... Lisa tries her hand at haiku. A poet I'm not. ;)

I choose my own...

Links to articles.
Links to the best resources.
Links to my own blogs.

Research is needed
to find good sources to which
I prefer to link.

Links are like footnotes
providing confidence to
those who will follow.

To follow links and
find new stuff I hadn’t read
can be a shocker.

My sources, vetted,
are hand-selected, so please
leave linking to me.

And if you so choose
you are welcome to create
links to my own blog.

Good day!

Tuesday, April 13, 2010

Vitamin D and Multiple Sclerosis: My Numbers

Last month, I was catching up on the doctors' visits and routine blood work. While at the neurologist's office, I picked up an order for the appropriate laboratory tests which would satisfy the needs of all three of my doctors (neurologist, rheumatologist, internist), including a test to measure vitamin D levels.

    One blood draw + One laboratory report

    = Three satisfied doctors + One happy patient

When requesting to have your vitamin D levels checked, it is important to ask for the 25(OH)D(3) or 25-hydroxyvitamin D test which is necessary to detect true deficiency.

In September 2008, I measured severely deficient in vitamin D at 7.8 ng/mL. Since then, we have been randomly checking the progress on my attempt to increase those levels. So far the highest I have obtained is 44 ng/mL.

Vitamin D Deficiency

As you begin to read the vast amount of research conducted on vitamin D and its effect on various diseases, you will soon see that finding a recommendation for optimum serum levels can be difficult. For one thing, the recommendations have changed dramatically over time. For another, there are two different measuring systems referenced in the literature.

    nanograms per millilitre (ng/mL) or nanomoles per litre (nmol/L)

For simplicity, here is a chart which summarizes the current recommendations:

    25(OH)D Levels and Health Implications

You can see how my measly 7.8 ng/mL is nonexistent. Last month's results came back at 36 ng/mL. Good, right? 36 ng/mL measures "sufficiency." Well, not really.

Read this post in its entirety:

Vitamin D and Multiple Sclerosis: Where Do I Stand?

Vitamin D and Obesity

Does obesity affect Vitamin D needs?

Obesity is associated with vitamin D deficiency as vitamin D, a fat soluble substance, is quickly sequestered and stored in the fat cells. Research shared by Dr. Michael F Holick (an expert in vitamin D) states that persons who are obese need 2-3 times the amount of vitamin D than a normal weight individual. This might explain my continued "deficiency" despite significant supplementation.

In September 2008, I measured severely deficient in vitamin D at 7.8 ng/mL. Last month's test results came back at 36 ng/mL which is "sufficient."

Good, right? Well, not really. Both my neurologist and rheumatologist would prefer that my vitamin D levels measure between 50-80 ng/mL (125-200 nmol/L), a range which conforms nicely to the recommendation of the Vitamin D Council.

Please know that the numbers used above are taken from my personal situation and do not represent general recommendations. However, the Vitamin D Council states that daily intake of 5000-10,000 IU vitamin D from all sources is safe in adults, 1000 IU for infants.

Read this post in its entirety:

Vitamin D and Obesity: Is there a connection and greater need for supplementation?

Monday, April 12, 2010

The Oklahoma Capitol Dome

Muffie at Kaleidoscope Muff has tagged me. Now I am supposed to insert the 10th picture in the first album of my Picasa photos. My first album does not have 10 pictures in it so I am randomly picking a different photo to feature. Oh, and I'm supposed to explain or describe it. Then tag 5 more people.

This is the Dome of Oklahoma State Capitol Rotunda, a feature of the original plans for the building built in 1914-1917 which had been postponed due to World War I. This dome was added to the Capitol Building in 2001-2002. It really is beautiful.

If you would like to participate, please consider yourself tagged. :)

Saturday, April 10, 2010

Musical Comedy

A friend on Facebook linked to the first video on this list and I laughed hysterically when I first watched it. A combination of fond memories and current stresses are mixed together when I see this.

1) I once had a very stern horn teacher who was known for yelling at students and getting a bit gruff.

2) I am a piano teacher who is seeing the days quickly count down to the big annual recital. Those kids REALLY need to get to practicing seriously or I'm gonna have to buy a yard stick!!

And, as a piano player, I have SMALL hands. :)


"I will survive" without the yard stick, I promise myself.


Thursday, April 8, 2010

Carnival of MS Bloggers #59

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Emergencies, Love at First Sight, Beyond Denial, Peapod

M.S. at 2 a.m. in Orlando E.R. 
by Jennifer Digmann

It’s been a little more than six months since Dan and my trip to Walt Disney World. My memories from that um, memorable trip are still pretty fresh. Let’s see, I remember theme park rides, amazing fireworks, images of Mickey Mouse everywhere and having a great time with my family and Dan. But really what I remember most is my late-night visit to Celebration Hospital in Orlando.

To treat my MS, I take a subcutaneous injection ever day, which is supposed to lessen the frequency and severity of my Multiple Sclerosis. After giving myself injections every day for the last 12 years, I guess it was bound to happen: I had to have an incident to remember.

And remember this one I will.

It was a little later than when I usually take my shot, but we were on vacation – getting away from it all. The day was pretty packed with activities. Eating dinner, taking my shot, and crawling into bed sounded like a perfect ending to a busy Disney day.

I took my pre-filled syringe from the refrigerator, pulled off the cap, inserted the needle into my stomach, and pushed on the plunger. But the plunger didn’t budge. This sometimes is typical because I’ve developed scar tissue from taking so many injections. And as usual, I asked Dan to push in the fluid. He pushed on the plunger, but it still didn’t move.

I gave it another try and in my brilliance, I thought, “Oh, just give it a little twist.” And the next thing I knew, I had a syringe in one hand, and a needle in my stomach. Understandably, I started to freak out. But I tried to stay calm, looking at Dan to fix it. I was pleading with my eyes, “Fix this,” and he was looking at me with confused, “I wish I could” eyes.

Just then, he took his fingers and tried to grab the pointed metal piece and well, you know how quicksand in movies looks? That’s how the needle disappeared into my belly.

Poof. It was gone.

“Oh no! Oh no! What am I going to do?” I frantically questioned.

Dan was as mystified as I was. What could we do? I tried to regain some calm and call the hotel front desk. They transferred me to safety, where I give the same story I just told you. Safety was as mystified. They told me to call paramedics, which I did. When the paramedics arrived I went through the whole story, again, and they said, “We’ve never heard of that. You should probably go to the hospital, and at least have an X-ray.”

So off to the hospital we went. X-rays were taken. At least three times, between doctors and nurses and X-ray techs, I heard, “Wow, never heard of that before.” Comforting, isn’t it? By about 2 a.m., after several X-rays turned up nothing, the doctor told me that he was going to let the needle work itself out, kind of like a sliver. After all, it would be more dangerous to perform surgery to remove something they couldn’t see.

And guess what I said?

“Really, hmm, I’ve never heard of that before.” But I trusted him, and besides I just wanted to go home; home to Michigan, that is.

Because the reality is, when you live with a chronic illness like MS, you never really can get away from it all.

P.S. It really turned out to be a great trip.

P.P.S. Yep, the needle is still there :-)

First Things First 
by Johnnymac

Where to start… the risk of sounding like a newbie at an XY Anonymous meeting…

Hi, my name is John, and my wife has MS. I’m compelled to share our story in many hopes….in hope that it can bring a tad more attention to the fight MS patients and their families go through every day, in hope that it can help others dealing with this dreaded disease, in hopes that it can help me think through the challenges we face and make the right decisions, in hopes that it can show other caregivers they aren’t alone in their fears and that the cross we bear is one of love not disease, and that it’s our love that pulls and pushes us forward. There are so many things I want to talk about, but first, here’s our story.

It was love at first sight. I was working in a kiosk at the Golden Triangle Mall in Denton, TX one afternoon 13 years ago when this incredible girl passed by. She was wearing a camouflage t-shit that let her shoulder tattoo barely show under the sleeve, ripped up jeans, short dark brown hair, and had the most beautiful smile I had ever seen. She was smiling at me. About a half hour later she stopped by my place of work and there was the ever so awkward moment of sales clerk trying to help a customer who didn’t really need help.

I kicked myself for days not getting her number.

She wouldn’t get out of my head, all I could think about was this woman I saw at the mall, and my friends were definitely tired of hearing me talk about her. Little did I know she was at that same time telling her best friend she saw the guy she was going to marry. Luckily Denton, TX is a fairly small college town and it didn’t take long for us to run into each other again, this time she was with someone that knew me who drug her to my kiosk and made an actual introduction. Courtney…. I now had a name to dream about along with the face.

Still no number, and I was yet kicking myself again.

You see, although I sometimes pretend otherwise, I’m really quite shy, and it wasn’t until about a month or so later with the assistance of copious quantities of alcohol that I was brave enough to approach her at a bar I frequented (where she happened to be on a blind date..ha!) and got her number. I believe the line was “If I let you get away again without getting your number, I’ll have to kick my own ass”……although I bet it sounded more like “Ish I vet you geet away again wishout hetting your number I’llll have to kish own ash”….I’m surprised she answered when I called. She did, and we’ve been together ever since.

We’ve had many wonderful experiences over the last 13 years, with our 7 year wedding anniversary coming up on April 13th as a reminder of one of the best. Although life was kind enough to put us in each other’s paths, it isn’t always kind. 2006 saw Courtney starting to experience some balance issues, which we explained away as being tired or perhaps a bit out of shape. She’s a photographer you see, and if you’ve never shot a wedding before you don’t realize the toll a wedding photographer's body goes through. I assisted as a second shooter a couple of times and was crying like a baby the next day complaining how sore I was. It seemed legit, it’s a taxing profession, and her balance wouldn’t get bad until towards the end of the weddings.

Well, it continued to get worse, and we couldn’t explain it away anymore. She had tingling in her right hand and a bit of numbness, her right leg was showing signs of foot drop (we didn’t know what that was back then), she had been experiencing bladder evacuation problems for a long time already, and the wall-walking was beginning. After two sets of MRIs (3 days apart) and EVP testing she was diagnosed with Relapsing Remitting Multiple Sclerosis. We had her tested for heavy metal poisoning and Lyme as well, both of which came back negative. Lumbar Puncture was offered as a final confirmation of diagnosis, but she was very afraid of the procedure and we were told it wasn’t necessary to clinically diagnose her (not to mention she had a wedding to shoot the day after they wanted to do the LP).

Over the last three and a half years, Courtney has slowly progressed in disability, going from wall-walking to a cane and now to a walker (which still hasn’t stopped her from falling at times)…….this progression in spite of using MS drugs like Copaxone and Tysabri. She has the common MS bladder issues like urgency, not being able to fully evacuate, having to get up 5-6 times a night. Spasticity is pretty bad in her right leg, sometimes even popping up like a Pink Flamingo when she’s trying to take a step and locking into that position. Lately she’s been having dizzy spells many times a day along with slight slurred speech (try saying that that 5 times real fast!).

No matter the challenges we face them together. She bears the brunt of the disease, I try to make it bearable.... the best I can. I used to wonder what our life would be like without MS, now all I really care about is that we’re together, and doing the best we can with the situation we’ve been dealt. Don’t get me wrong, we’re fighting this thing tooth and nail, and in the days to come I’ll be sharing our current journey into CCSVI diagnosis and hopeful treatment.

Thanks for reading, and please come back……I have so much to talk about.

We Might Have Sold Our House!
by Joan of A Short in the Cord

A lovely young couple came to visit our house today.

She likes the view from the window.

Of course, they had to discuss it with their agent. Not sure if they'll want to move in.

Stay tuned!

KLP Web PhotoWhat does it mean to be disabled? I received the diagnosis of multiple sclerosis (MS) nearly twenty years ago and I'm still learning.

In the early years (and many of the latter ones too) I was too scared to admit to anyone I had an incurable illness. Denial worked well for me -- like the Law of Attraction in reverse -- out of sight, out of mind, and out of my conscious reality.

But MS must have remained in my subconscious reality because its strange and mysterious symptoms continued to arrive at sporadic and inconvenient times. Like when I woke up thinking I was hungover one morning and was completely blind in one eye by noon. Or the time I was pregnant and lost vision in both eyes for several weeks. Or the day my dog died and I saw the world in duplicate through crossed eyes for the next month.

Don't even ask about my ever present clumsiness, bruises from tripping and falling over nothing, slurring my words when perfectly sober or forgetting even the simplest words and names. It helps to have a sense of humor, and I often blamed these deficiencies on being blonde.

In fact, covering up my symptoms became a source of pride. I even went back to school to become a naturopathic doctor so I could advise others about how they too could cure their "incurable" illnesses with the "right" attitude and lifestyle choices.

But then I became a lawyer.

Everything I had preached about "balance" and "stress management" went right out the window, and the endless hours writing legal briefs for corporations I cared little about (for an employer who cared less about me) made me finally admit that MS is a serious dis-ease. Many times while sitting my office the intense itching/burning in the nerves of my hands and arms made me wish I were a wolf caught in a trap so that I would at least have the option of gnawing my wounded limbs off to be free.

But sadly the only "trap" I was caught in was the snare of working for BigLaw with its lure of financial reward through endless billable hours. So my body solved the problem for me by protesting ever more loudly, and my mind finally had to admit the label "disability" really means something.

It is a humbling experience.

I reluctantly asked for (and begrudgingly received) the accommodation of a reduced hours work schedule. Four months later I was laid off.

My hope for this blog is that by sharing my thoughts and personal experiences about losing a career, fighting for disability benefits, and facing an entirely new lifestyle will encourage others facing major transitions to share their stories too.

One of my biggest obstacles and annoyances is grocery shopping. I have to admit that when it’s a small order I don’t mind trekking to the A & P for some things, but when I have to do a big run I get very stressed. I don’t enjoy grocery shopping to begin with: all the decisions, navigating the crowded parking lot (I don’t yet have a handicapped parking placard, but it’s getting very tempting..), navigating the crowds in the store, trekking everywhere for items– oh my goodness! Just talking about all of it is making me tired! Worst is the lugging of heavy bags from the cart into the car and then into the house. I HATE it. I’ve tried to accomplish this during bad stretches with a cane in hand. UGH. I can only imagine using one of the store’s scooters with the ridiculously small basket attached to the front. Nobody moves for me now as I lurch through the aisles, often trying to keep my balance and not crash into someone like what would appear be a drunken sailor. LOL. I can only imagine the added annoyance of a scooter. So the discovery of grocery store home delivery systems has been a sanity-saver for larger orders.

I’ve been utilizing Peapod online shopping as of late. It delivers from Stop n’ Shop, which is one of my local stores. The delivery fees are reasonable: $9.95 for a $60+ order and $6.95 for a $100+ order. The website is easy to navigate and weekly specials are listed. I can also create a bare bones list of regular items that I can continually refer back to in order to save time. Other grocery delivery programs abound. Below is a small list of regional chains (the U.S.) and their programs. Some provide online shopping and home delivery while others allow you to pick up your online order from the store. For your own area of the world, consider calling or looking up local and regional stores online and learning about their online shopping / delivery programs. I find myself much more at ease because of this fantastic concept:
AUL Superstore
Homeland Delivery
Giant Food Stores
Acme Food Stores

This concludes the 59th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 22, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 20, 2010.
Thank you.
Comments for this post.

Wednesday, April 7, 2010

Obesity, Menstrual Cycles, and Weight Loss

Girls gain weight during their menstrual cycles, right? That is something which I had heard sometime growing up and which I just took to be fact. So with over three months of weight loss under my belt (haha, pun intended) covering the time of four menstrual cycles, I thought it would be good to see if this theory held true.

For years, I’ve had the “empty pit” phenomenon of being ravenous in the day or two just before my period begins. When I can’t seem to get enough carbohydrates or chocolate, then I know it’s time to be prepared with the extra Ibuprofen and feminine hygiene products. A girl can’t be caught off-guard.

What I’ve personally seen, according to the chart on which I’m keeping track of weekly weigh-ins, is that my weight actually stays steady or drops just a bit the week before each period. As I wondered why that might be, I conducted a google search to try to find the answer.

Read this post in its entirety:

Menstrual Cycles and Weight Loss

Sara hosts Patients for a Moment - Disclosure

To tell, or not to tell? When it comes to a chronic or serious health issue, that is one sticky question. And if you do decide to tell, what happens next?

Sara of The Single Gal's Guide to Rheumatoid Arthritis hosts this week's Patients for a Moment blog carnival. She posed the question of disclosure for bloggers to ponder.

The contributions share "an array of thoughtful responses, reactions and reflections on the subject." Go check it out and consider participating in the next round in two weeks.

Photo Credit: Sara Nash

Tuesday, April 6, 2010

NMSS and AAN team with Dr. Zamboni to discuss CCSVI: Attend the Website Next Week

In case you hadn't heard, there will be a webcast/forum discussing CCSVI next week. Attend if you can and be sure to submit questions ahead of time.

On April 14, 12 p.m. ET the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:

  • Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
  • Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
  • Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
  • Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Register now online (12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forum through Facebook or Twitter, or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.


Beth Clark
National Multiple Sclerosis Society
Broadway Station
900 South Broadway, Suite 200

Denver, CO 80209

Monday, April 5, 2010

Weight Loss, Tumor Necrosis Factor, and Rheumatoid Arthritis

It’s April, finally!! Spring has arrived and it’s time to start shedding the big coats and bulky sweaters. The leaves of my lilac bushes are budding and the ground is beginning to look green. I love this time of year.

However, I haven’t always loved moving into the clothing which leaves you more exposed. For the past few years, I had developed a blanket or cocoon of cushion (ie fat) which insulated me from the physical and emotional changes going on within my body. See, it’s only been three years since I was diagnosed with RA and barely five since MS made itself a permanent resident.

But some things have been changing for the better in the past year or so and one of them comes from the support I’ve received in this and other communities of patients online. That support and acceptance is what has led me to share my weightloss journey in public with anybody who might follow it at

Here in April, we are focusing on Diet and Exercise and how they effect your health conditions. Well, I’ve already been focusing on that every month this year. And the result is that I’ve successfully managed to lose at least 18 pounds so far. Just another nine pounds and I will have achieved a 10 percent weight reduction since January. A realistic goal for me would be to achieve a 20 to 30 percent reduction, perhaps by the end of the year.

In the past month or so, I’ve been making the doctor rounds, seeing each of the folks which whom I manage my various health conditions. This was the first time I looked forward to measuring my weight on the doctor’s scale. While at my primary care doctor’s office I even asked, “could you tell me what I weighed last year?” That’s when I learned that I’ve actually lost 30 pounds since February 2009. Cool!

So this time when I saw my rheumatologist, I wasn’t fearful of the severe warnings to lose weight. She has been on me for the past two years with that recommendation. I even missed or postponed some appointments last year because I didn’t want to face her yet again without any progress made. This year was different!!

Read this post in its entirety:

Weight Loss, Tumor Necrosis Factor, and RA

Sunday, April 4, 2010

Saturday, April 3, 2010

Vote for Brass and Ivory in 1st Annual Dosie Awards

Brass and Ivory is included with several MS-related forums and websites as nominees for the 1st Annual 2010 Dosie Award created by Jonathan Richman at Dose of Digital.

For convenience, follow the link below to vote for Brass and Ivory: Live with Multiple Sclerosis in the 'Best Patient or Caregiver Blog' category which includes blogs created by patients or caregivers, not owned by a pharma or healthcare company.

Vote Now for Brass and Ivory!

The voting is happening in two parts and the deadline is Tuesday, April 6 to get your recommended candidates into the Final Rounds.

Also, please vote for This Is MS and HealthCentral in the first half of the Round 1 group and for How I Fight MS and one other MS-related website in the second half of the Round 1 group. (Vote here for Round 1 groups!)

The Semi-final Rounds
  • Round 1: Wednesday, March 31: Best Brand Community, Best Non-Brand Community (Vote now if you missed it!)
  • Round 2: Thursday, April 1: Best HCP Community, Best YouTube Channel, Best Pharma/Healthcare Company Blog (Vote now if you missed it!)
  • Round 3: Friday, April 2: Best Patient or Caregiver Blog, Best Industry Observer Blog (Vote now if you missed it!)
  • Round 4: Monday, April 5: Best Facebook Page, Best Twitter Account
  • Tuesday, April 6: Noon, Eastern Daylight Time: Deadline to cast your vote in each category in the semi-finals

Don’t worry if you miss a day, the voting in each category will remain open as indicated below. For example, you’ll be able to vote for Best Industry Observer Blog until Tuesday, April 6. You won’t have to vote on that category on Friday, April 2.

The Final Round

  • Wednesday, April 7: Final Round Voting for every category
  • Wednesday, April 14: Noon, Eastern Daylight Time: Final Round voting is closed

Friday, April 2, 2010

Mid-Atlantic Multiple Sclerosis 'MS' Bloggers meet in Delaware

April 1, 2010, Joan of A Short in the Cord, Jen of MS Strength and HowIFightMS, and Lisa of Brass and Ivory and HealthCentral joined together for a Mid-Atlantic MS Blogger shin-dig at Joan's house. It was spring break for the music lesson kiddos and time for a brief roadtrip.

We were joined by Sonia who is a regular at Joan's Friday night chatroom gatherings for MSers in Delaware and all over the world. Come join us sometime.

While sitting around and chit-chatting in the kitchen...

...we each took turns getting out the cameras to document this "frickin' big deal" as Joan called the event. ;-)

Yes, Joan, I quoted you on this, but chose the 2nd version of the phrase just to preserve the sweet, innocent image which your charming demeanor and home exudes. LOL.

Is the Quiche ready yet?

Check out the fabulous lunch Joan prepared for us. This after the bounty of appetizers and snacks consumed in the kitchen already. Sonia even brought a HUMONGOUS bottle of wine to complement the occasion.

Freshly fed and enjoying some great conversation and company, we look like a satisfied bunch don't we?

We did talk about MS-related stuff, including our not-so-favorite symptoms, but we talked about much more. Hey, check out Joan's singing bowl. She got it going for us and now I kinda want one.

And to prove that we all really do exist beyond the electronic, computer world, we smiled broadly many times for the cameras. Thank you, Jen, for being a truly great friend beyond the blog and for putting up with my sometime insecure nature. In eleven short weeks, we'll have to see if Diane in Seattle really exists too. :-)

Thank you, Joan, for your hospitality and for living so centrally located. LOL. Your home is so warm and inviting, especially with your "private" pond and huge bounty of bird visitors. How you get anything done with that peaceful distraction, I'll never know.

I haven't been big on group meetings since the first year after diagnosis. But it was somewhat comforting to see others who have a slight hitch in their walk and who hold the table when standing. It's the little things which make a difference.