Monday, October 31, 2011

Trick or Treat

Happy Halloween!!  

The three little guys (Pippin, Oscar, and Musette) who allow me to live in their home have three colorful visitors on the front porch.   Pippin has made new friends, I think.

Pippin and the Porch Cats
In other news...
 I can assure you that this was definitely not a trick.  Certainly a treat. 

Rob did good.

Thursday, October 27, 2011

Carnival of MS Bloggers #100

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

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “ I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

by Mary K. Mennenga

To see the person
Who isn't willing to quit or given up
On living life, hope and love
Life is about
Making the most out of what I've got to work with
It's not about what I can no longer do
Instead it's learning new ways of working within the limitations
Living life has brought to all of us
Pride is a force that will need to be dealt with
It's one of the things that can defeat anyone
Remember I'm are still in control of my choices
Will I make mistakes of course that's how most learning gets done!
All I ask is your understanding that
If the reason you're helping is because you think you have to?
That kind of support feels more like pity to me
Instead of being something you want to do with me

Honestly pity is just another form of guilt
That has nothing to do with me

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.


need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."

This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. 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, November 8, 2011.

Thank you.

Wednesday, October 26, 2011

Look Beyond the Headlines

Headlines - Articles
Research - Abstracts
Justification - Products
Pharma - Non-Profits
Advertising - Marketing

All too often nowadays, any item from the list above can be easily confused for another.  Take one recent headline from last week....
Approximately One-Third of MS Patients Experiencing Relapses Do Not Adequately Respond to Traditional Corticosteroid Therapy, According to New Data Presented at the 5th Joint Congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis.  Survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS)-- 
Funding for the survey was provided by Questcor Pharmaceuticals and the abstract was presented at ECTRIMS by an employee of Questcor.  Questcor happens to have a product for which they are working hard to promote and increase prescriptions as an alternative treatment for MS relapses. 

I'd like to know who wrote the questions for the survey, because responses can be directly affected by how a question is asked.

In anticipation of their 3rd quarter financials, an article in late September discussed Questcor's "recent market value of about $1.7 billion."
"Questcor said Wednesday that it expected new paid prescriptions for Acthar in treating multiple sclerosis exacerbations to exceed 850 in the current quarter. Acthar costs $40,000 to $50,000 a prescription for that usage. Questcor said the prescription number was up 13% from the second quarter and up 160% from a year ago."
Questcor finally did release the results of their 3rd quarter yesterday.
"Questcor said the number of paid prescriptions for the multiple sclerosis treatment leaped 174 percent from the prior year, to 886 from 323. Use of the treatment for other conditions, including nephrotic syndrome and infantile spasms also rose.

`We believe Acthar has the potential to benefit many more MS, NS, IS and possibly lupus patients in the future," said President and CEO Don Bailey."
This MS relapse treatment costs as much as two rounds of Rituxan infusions.  It costs as much as a year's worth of MS disease-modifying therapy.  This usage alone will bring in more than a billion dollars to this little one-drug company for a drug which has been around since the 1950's.  Amazing.

But to be fair, I'd like to hear from an objective physician about the difference between this treatment and the more traditional round of Solumedrol infusions (which costs my insurance company approximately $600 in total).   There was to be a local presentation on Saturday, but it has been postponed.  Maybe not enough people were interested.  If it is rescheduled, I'll let you know so that we can prepare questions for the Q&A session.


Unless you think that this headline is an unusual example, believe me when I say that it is not.  Other recent headlines have focused on a survey conducted by the NMSS this summer on the impact walking difficulties have in those living with MS.  It is being used by Acorda Therapeutics to boost articles related to their main product known as the "MS walking drug."

Smart business approach.  Sure.
Easy to miss the connection between the two - survey and product promotion - absolutely.
Should patients look beyond the headlines, dig deeper into the story, to find those connections?  You betcha.

Monday, October 24, 2011

Hand-Written Orders Required

As an empowered patient, I keep track of all tests and results. I recommend to others that they do the same. If you get blood tests done, request copies. If you have an MRI, get copies of the radiologist's report and a computer disc of all pictures. These are just the beginning of taking care of your health. The next step is understanding what is found in these test results.

In my area, getting copies of MRI results is super easy. The MRI technician asks you to wait a moment when the tests are done. You wait for 5 minutes or so and a CD is brought to you with the images taken during the test and the software needed to view the images. You are expected to keep this CD for your records and to take it with you to your next neurologist visit. In a couple of days, you can walk up to the front desk of the same MRI center and request a copy of the radiologist report. (You probably can probably call to get a copy mailed to you, but this is faster in my case.)

Ever since I started on this journey of living with chronic illness, I've learned the importance of tracking something as simple as your blood test results. It was from copies of previous blood tests dating back to the very beginning of early RA symptoms in my hands (when things were still very vague and I knew that 'something just isn't right') that my rheumatologist informed me that my undiagnosed RA had dated back a few years. My primary doctor didn't recognize the very subtle pattern found in those blood tests.

When I get first diagnosed with MS, it was easy to get copies of blood tests. All I had to do was ask that a copy be sent to me when I was at the local lab for the blood draw. I would always get a copy in about a week.

A couple of years ago was the first time that the technician at the local Quest lab would not add my to the list of recipients for the tests. She eventually did call my rheumy's office which was in the same building to ask if she (my doctor) gave permission for me (the patient) to get copies of the tests. Something had changed in the state of Virginia. Patients no longer could have easy access to records.

So since that one trip to the lab, I made sure to ask my rheumatologist to add me on the courtesy copy list which always includes my neurologist and primary care doctor. Sharing test results between doctors helps to cut down on the number of blood draws I undergo during the year and it keeps everybody in the loop.

Requesting this addition to the standing order I get twice a year for routine blood work takes an extra moment during the appointment and takes a tiny bit of my attention away from other things which might be important to discuss. But that is one cost of staying empowered.

A few weeks ago, I had a neurology appointment. It was time for routine blood tests and my standing order had expired. So my nurse practitioner wrote an order which would cover her interests and those of my rheumy. She listed those other doctors as recipients of the results. She also indicated on the order that I (the patient) should also receive a copy.

The neurology clinic is so forward thinking that they had added a statement and box which could be marked to indicate that records be sent to the patient. My nurse practitioner not only put an X in the box, she circled the entire statement so that it would not be missed at the lab when the order was actually processed.

That same week I met with a new doctor, a cardiologist. This doctor had a couple of other tests which she would like to have. So she added her additional requests to the order and added her name to the list of recipients. This was not a problem, but now there are four doctors to receive the results in addition to me, the patient.

My follow-up appointment with the cardiologist is Wednesday. I have been having irregular heartbeats and wore a Holter monitor for a day to record my heart activity. The answer to the irregular heartbeats could be something as simple as a magnesium deficiency. I would know if this were likely, IF I had received my test results.

But...I will be going into this appointment without knowing the test results. Quest did not send me a copy. I am not happy about that.

I called Quest to find out if there had been a problem processing my results. What I found out really makes me angry. Apparently as the technician was adding doctors to receive results (and she had already added me first as I insisted), I (the patient) was bumped off the list. There is only room on the request form for three additional recipients for the records.

Only room for three. That was the first problem. The next problem is that I was told in the state of Virginia that the request for copies to the patient must be hand-written on the order. Pre-typed statements on the order form are not accepted. That is ridiculous in my book. If my doctor wants to make it easier for the patient to be empowered and save time during the office visit when filling out orders, why can't it be accepted?

At the risk of sounding calm about it, I was not a happy camper when I was told this tidbit of information. My neuro's order forms are geared toward efficiency and effectiveness of use. My rheumy's order forms are not equally up-to-date with the latest philosophy in participatory medicine.

But the rheumatologist's orders are accepted when she cc's the patient. My neurologist's orders are not accepted. There is something wrong with this picture. It's like a step backward and "regulations" are putting up unnecessary barriers to information.

So what's the solution? For me, I will have to ask the cardiologist's office to print me a copy of the blood test results. I don't think that it should be a problem (I hope) especially since as my first appointment, I brought my spreadsheet of all my blood test results dating back to 2003.

I keep this spreadsheet updated in my computer every 2-3 three months. I can see trends which correlate to different changes in health, both temporary and permanent. I can see that Tamiflu caused my liver enzymes to shoot up through the roof but that methotrexate does not. I can see how different lymphocytes are affected during an MS exacerbation. Basically I can spot when things start to look unusual.

But according to the state of Virginia, I should not have access to my records unless: 1) my doctor gives permission, and 2) my doctor HAND WRITES the permission on the lab order.

HAND WRITES the request. How silly is that?

Friday, October 21, 2011

Gratitude Friday

I've been feeling a bit blue this week, so I decided to try to do something about it.  First I wrote a scathing post about abstracts, surveys, companies, and marketing.  But then I decided to let it sit a little while before hitting the publish button.

Then I was thinking about how sore my muscles are today.  But it is a good thing.  We had a substitute teacher in yoga class yesterday.  I loved her!  This class resembled previous yoga classes I've participated in before.  Everything we did made sense and I got a really good workout with some great stretching and strengthening.  I want her to come back soon.

Cat #1

And finally, one of my "little guys" (aka Pippin the cat) wanted my attention.  He actually used his tiny little meow to say hello.  So cute.

All I had to do was pick up the cat comb and he was all over me.  I don't think that there's any salt left on my hands and arms as he likes to lick while he's being brushed.

Cat #2

So why is it that Autumn has arrived, the weather is colder, but yet the cats are shedding like crazy.  You can't pet them without getting fur all over your hands or face, or tickling your nose.

Colder weather is supposed to encourage thicker coats of fur, right?

But then again, I gotta remember - this is a house whose residents don't always follow the "rules."  :-)

Wednesday, October 19, 2011

MS Risk and Teenage Shift Workers

"Shift Work at Young Age is Associated with Increased Risk for Multiple Sclerosis”

That’s the title of a report which will be published in the November Annals of Neurology.  Researchers analyzed information derived from two epidemiological studies in Sweden, examining environmental and genetic risk factors for multiple sclerosis.

The first study, Epidemiological Investigation of Multiple Sclerosis (EIMS), involved completed questionnaires from 1343 MS patients and 2900 case controls.  Mean age for disease onset was 33.4 years and mean time to diagnosis was 1.0 year.  The second study, Genes and Environment in Multiple Sclerosis (GEMS), comprised 5129 cases with MS and 4509 matched controls.  Mean age for disease onset was 33.0 years.  These studies did not have any overlap in participants.

Sleep deprivation is also associated with an increase in pro-inflammatory cytokines such as interleukin (IL)-6 and tumor necrosis factor-alpha (TNF-a).  IL-6 induces the development of Th17 cells which have been shown to play a crucial role in the development of autoimmune diseases such as rheumatoid arthritis and experimental autoimmune encephalomyelitis.  Also, significantly increased levels of IL-17 have been seen in MS patients as compared to healthy individuals.  

What was seen in the data is evidence that the longer duration of shift work a person experienced before the age of 20 demonstrated a greater increase in MS risk.  Researchers stratified the risk between less than three years and three years or more.  In EIMS, the odds for developing MS increased to 2:1 in persons who worked shifts for more than three years.  In GEMS, the corresponding odds were 2.1:1, which is noticeably different than the 1.1:1 odds ratio for less than three years of shift work before the age of 20 found in the GEMS study.

Read this post in its entirety:

Teenagers Working Late Nights May Have Increased Risk of Developing MS

Tuesday, October 18, 2011

Horns in the Air

Spontaneous concert of duets by Jacques-Francois Gallay played
on natural horns, on a plane, in Brazil.

 Gallay and the large volume of music he composed for horn were the subject of my dissertation.  This is an example of the type of horn I play on occasion.

(h/t Bruce at Horn Matters)

Monday, October 17, 2011

National MS Society Launches a Blog!

Coordinated with coverage from ECTRIMS, the National MS Society has launched a blog.  This is the first phase of expansion of their online community in the coming year.

ECTRIMS/ACTRIMS (The Congress of the European and Americas Committee for Treatment & Research in MS) is occurring in Amsterdam during October 19-22, 2011.  In attendance at the conference is "the largest collection of MS researchers in the world, with more than 7,000 scientists and clinicians from around the globe, meeting and presenting on cutting edge and breaking MS research news."

Watch for live updates brought to you by Julie Stachowiak and Kate Milliken (working with NMSS), as well as tweets and video from Ashley Ringstaff at MS World ().

Let's all welcome NMSS to the MS Blogging Community.

The MS Blogging Community has grown from about 100 blogs four years ago to over 600 MS blogs written by patients, family members, caregivers, and organizations.  The community continues to grow with more than 300 blogs currently active.

Visit the MS Blogging Community page for its real-time feed of new posts published by the bloggers who are listed.  I'm sure that I do not have every MS blog included on this page yet.  Please contact me if you are not listed.

Don't forget to subscribe to the Carnival of MS Bloggers, and please follow Brass and Ivory.

Sunday, October 16, 2011

Webinar - Estate and Financial Planning

“Estate and Financial Planning For Life: In 12 Steps” - a Webinar presented by NMSS.  Monday, October 17, 2011 at 12:30 pm - 1:30 pm EST.
  • To register for this webinar, click here.
  • To download the PowerPoint slides for the presentation, click here.
The 12 steps for estate and financial planning that will be discussed in the webinar are:
  1. Organize your emergency information and information about your advisors.
  2. Designate a person to handle your financial and legal issues by creating a power of attorney.
  3. Designate a person to make health care decisions and access medical records by creating a health care proxy.
  4. Communicate your health care wishes by creating a living will.
  5. Protect your minor children with an emergency child medical form.
  6. Sign a will.
  7. Create a personalized (not boilerplate) revocable living trust to manage your assets during your disability or illness.
  8. Ensure that your insurance coverage is in order.
  9. File your beneficiary designations and confirm title to your accounts.
  10. Give back so you can demonstrate important values to heirs, help others, and inspire others.
  11. Communicate your estate and financial plan to your advisors, family, and friends.
  12. Review, revisit, and revise your plan so it can continue to protect you.
It is important to note that estate planning is a process. It entails much more than just having a will. It is vaster than tax planning.

Everyone should have an estate plan to protect themselves and their loved ones. People living with multiple sclerosis should customize their plan. The webinar will educate you on how to do this.

(h/t Forbes)

Hope After Domestic Abuse

When we think of domestic abuse, what comes to mind?  The woman who is beaten and afraid to leave the relationship.  Elderly who are at the mercy of spouses, children, or hired help.  The spouse who may not hit but who controls all points of contact with the “outside” world.  The spouse or boyfriend who belittles, isolates, or limits access to financial resources.  The disabled person and his/her caregiver who begin to get crushed by the relentless pressure of coping with the challenges of disease and life.

What we don’t think about as often is what happens after the abuse?  Can survivors go on to find healthy relationships?

Read this post in its entirety:

After Domestic Abuse: Finding a Healthy Relationship

Thursday, October 13, 2011

Carnival of MS Bloggers #99

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

Parking with MS, It's Not Always MS, Living Drug Free, Grabbing Life

by Lisa Emrich of Brass and Ivory: Life with MS and RA

As is true for many who are newly-diagnosed, my first year after diagnosis was full of learning experiences. I had a significant relapse that created a need for months of occupational therapy to regain use of my fingers on my left hand. I had another relapse only months after diagnosis and underwent the 5-day Solumedrol treatment twice in one year.

Another thing which happened only one year after I first joined the neurology clinic was that I began tripping. I fell on our stairs a number of times, leaving bruises on my shins. I fell on the sidewalk outside. I was having doubts as to my ability to walk any distance at all, for good reason.

It was early October and the weather was turning wet and chilly. My neurologist suggested that I get a handicapped placard. (Actually I had asked him about getting a placard during our previous appointment, but that was before I told him that I had fallen several times.) He wanted me to be safe. He didn't want me walking on cold, wet (and soon to be icy) sidewalks while tired. That last thing we both wanted was for me to slip in a crosswalk and be hit by a car.

So in October 2006, I applied for my very own disabled handicapped parking permit. In the state of Virginia, these permits are valid for five years. This past week I received my renewed parking permit. Somehow seeing the new expiration date (October 2016) on this valuable piece of plastic makes me realize how long I've been living with MS already.

On one hand, not very long at all. On the other hand, the next time I have to renew my parking permit, it will have been more than 16 years since I first went blind. Just made me stop and think.

by Christie of The Lesion Journals

I knew it was only a matter of time before I made a very important decision. To do the handicap placard or to not do the handicap placard. That is the question. I have been wrangling with this one for some time, always coming up with reasons as to why my perfectly (dis)abled body does not need to be rescued by a privileged parking space. That’s how I see it. Here’s why.

First, my symptoms are never that bad. At least that’s what I’ve always told myself. I can park in any spot in the parking lot of Bed, Bath and Beyond and capably walk to the front door. This always leads me to my second point, which is that I really do not want to take a handicapped spot away from someone who needs it more than me. How on earth would I be able to live with myself if I drove my car atop the asphalt spot painted with the universal disabled symbol and actually took it from someone else? I am not sure I could live with the guilt of stealing a spot when I feel perfectly fine. This line of thinking always ends with the forever silent, unmentionable realization that I am a disabled person who might need assistance one day too.

Nope. Not this MSer. My third point I always think is a strong one. I need the exercise. Walking. Walking is good exercise. The farther out I park the car, the more exercise I will get. I often reason with myself. I do not need to shrink my already limited exercise routine by decreasing the steps per minute that would come from parking so close to the entrance of the mall. Ha, ha! Good one.

Lastly, the place where I need assistance the most is at work yet I adamantly tell myself that I am not ready to come out with my diagnosis to my office mates. Parking in the handicapped area will clearly force me out of the MS closet. I know what you’re thinking, ‘o readers of mine. How much of a secret could it really be if I write publicly on this blog? Minor detail. I remain inflexible. I cannot get a handicapped placard. Everyone will notice me stepping out of my car parked in the blue zone right in front of the office building entrance. It will be so immediately obvious. There is no way to avoid it. Everyone knows what kind of car I drive and they do not have a clue that I live with MS. I always ask myself questions. How is this going to work? Am I ready for this or should I dream up a story that I am recovering from a very serious bike accident? People will believe me, right? Yes I realize that keeping up with a story like this will be difficult and has the potential of getting completely out of hand as I will be forced to describe every elaborate detail of my crash. Besides, I can’t wear a fake cast forever. On the other hand, parking is so limited at my office that many of us are forced to park on a dauntingly steep hill that is an exercise routine all in itself. 300+ steps from the office front door to the top. I counted one day. I still conclude and tell myself: more points to add to my third reason above if I don’t get the placard, right?

This all changed with my recent relapse. Just last week my MS took me by surprise and rewarded me with new numbness, from my waist down. Not full numbness but enough to give the impression that I should probably stop drinking at noon. This is when I decided it was time. I wrote it down on my task list: fill out DMV form for disability placard. I will let you know how my first parking experience goes when my pretty blue placard arrives in the mail. Stay tuned.

In the meanwhile, I am sure many of you have had similar experiences. I would love to hear from you, to hear your story. How was your experience in getting the disability placard?

by Laura of Inside My Story

A recent conversation with my daughter went something like this:

Daughter: (looking worried)  Mom, are you alright?

Me: (puzzled)  Yes, why?

Daughter:  I’m worried about you.

Me:  Ok, why?

Daughter:  Because you put boxes of macaroni and cheese in the freezer.

Me:  (laughing and very tempted not to explain) Relax, I’m not losing it.  I know I put it there because I’m  trying to conquer some moths that have taken over my pantry.  The pasta is safe in the freezer.

Daughter: (looking relieved) You had me worried,  I thought it was  your MS.

Now  first of all, remember that tip because if you ever get those moths that want to take over your boxes of cereal or other dry goods, the freezer is the best hiding place to stash their favorite grains.

The second point in sharing this episode is it illustrates how it is entirely too easy to worry and identify all unusual symptoms and behaviors as being connected to my MS.  So many times I think this MiSerable disease is acting up, only to slowly realize it was something entirely separate and unrelated.

My right foot great toe had a problem a while back and the podiatrist treated it as a neuropathic pain, complete with a compounded formula gabapentin cream to put on it two times a day for several weeks to quiet the nerve.  It solved the problem and that toe hadn’t bothered me for over a year when suddenly last week the same toe was back to throbbing.  I hobbled around on it, assuming it was my MS once again.  I was cursing myself for throwing away that jar of leftover cream.  I was pleasantly surprised when on day three of agony, I discovered by trimming my nail the pain went away.  I was working on an ingrown nail, but had assumed it was my MS.

Do you and your family just jump to the conclusion that your MS is to be blamed when problems arise?  We sure do in my house.  It’s much too easy to do when MS is a constant companion and a source of so many problems.

Macaroni in the freezer?  Ingrown toe nails?  Sometimes it is good to have an explanation other than it’s my MS;  it takes the blame way too often and it’s nice to give it a break.

by Kim Dolce from Doc, It Hurts When I Do This...

I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.

I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.

Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.

Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.

It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.

I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.

Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.

I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.

by Nickey at Multiple Sclerosis And Our Battles With Autoimmune Disorders

WOW! Things have changed since I last posted. Have you found yourself in a slump or depressed telling yourself everyday "tomorrow I will do it" or "tomorrow will be better" but it just doesn't happen? I was there! I was stuck in what I call my funk. I woke up one day and said "NO MORE". No matter how much it hurts I will Learn To Take My Life Back. You see, I had let Multiple Sclerosis take my life from me but not anymore. It was like I was stuck inside myself screaming to get out.

It all started back in October of 2010 when I went in to my local general practitioners office just to get my pulse and blood pressure taken. After sitting for 15 minutes with no movement they came in and took them both. The poor nurse nearly fainted and did it again then ran out of the room. She came back with a wheel chair and said "your doctor wants you in the Emergency Room NOW". After lots of IV fluids and medications to get my pulse and blood pressure down they admitted me for all the wonderful testing. Thank God I wasn't having a heart attack. See we lost our father when he was just one year older than me now at 34yrs old of a massive heart attack.

After being admitted they did all the stress test. I barely started the stress test and they hurried and got me off of there b/c they just knew I was going to have a heart attack. After that hospital could not figure out why this was happening they transferred me to another, bigger hospital in the Cities. This hospital just knew I had what my fathers fate was. They then decided I had to have and angiogram to see if my artery needed to be ballooned. Come to find out my arteries were as clean as a new born baby.

During my stay in the hospital a picture was taken of me. At the time of the picture I was shocked to say at 5 "8" I weighed 290 pounds. When my mother seen me she told me "Nickey, if I didn't know it was your truck you were getting out of I would have never known it was you". She didn't even recognize her own daughter and neither did I. This picture did something to me. I didn't know the person I was looking at. I stared at myself in the mirror and had no idea who that person was anymore. I didn't recognize her. I was over medicated, over weight, depressed and ready to give up. Through my faith and looking at my little boy who needs his mommy so bad I said once and for all "NO MORE!!"

That day I started taking my life back. Without telling anyone of my plans I started my journey. I began by doing a complete lifestyle change by getting off of all those medications I didn't need to be on and eating the healthiest foods I could find. At first I couldn't add any exercise b/c I was at such a weight were just walking to the kitchen would cause me chest pains. I had also found out that one of the meds they put me on caused depression so I immediately got off of that one and OMG did the clouds clear. I could think again! I could live again! I could Love again, not just others but MYSELF!

I was so overweight that my cholesterol was off the charts. They couldn't even calculate it. My blood pressure was crazy high and my blood sugar was on the brink of me being a diabetic. Just from changing my portions and what I ate I lost 60 pounds. After the 60 pounds was off I began exercising to get my legs working again. I am happy to say that I am now down 80 pounds and weigh 210. My goal is 150-160. So I still have some work to go.

I now juice all my fruits and vegetables, which is so good. I also upped all my vitamins. I had my labs drawn again and I am happy to say that everything came back perfect. My blood pressure is perfect, my cholesterol is perfect, my sugar is in the normal range but a little high. I no longer eat meat unless it is turkey or fish and eat or drink lots of fruits and veggies.

My latest add on to my journey has been getting a recumbent bike. All those spasms I was having in my legs are now cut in half if not more. I make myself do a minimum of 30 minutes a day and if I am having a good day I do an hour. My energy is up and I am feeling better. Don't get me wrong MS'ers I still have all the wonderful pains and aches, fatigues and struggles that come with MS but life is so much better. For the first time in 4 years I feel like I am living again. You see it's all in how you look at yourself and were your mental status is.

With all this said I want you all to know that no matter your weight or if your in a wheel chair or using a cane like I was YOU CAN DO THIS. Never give up and always push yourself to do something everyday to make yourself feel good about YOU. It can be something as small as looking in the mirror and saying to yourself "I love myself and like loving myself". If you feel lost or hopeless remember you are never alone and Never Give Up. I am a spiritual person and I believe through mindful breathing, meditation and pushing ourselves past that mental block we can get our lives back. Never say Can't but always try.

To all my readers out there we may have never met or may not have even spoken with one another but please know you are not alone in this battle called life. Life is so much better when we fight for ourselves. I will be writing more about the juicing and bike riding.

With Love and Hugs NEVER GIVE UP!!

This concludes the 99th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 27, 2011. 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, October 25, 2011.

Thank you.

Tuesday, October 11, 2011

Review of St. Petersburg Symphony/National Gallery Orchestra Concert

Review of our concert on Sunday. The horns get a special mention. :)

St. Petersburg Symphony, National Gallery orchestras play Mussorgsky, Prokofiev
By Joan Reinthaler, Published: October 10

Face it — the National Gallery of Art does not have a concert hall. It has the charming Gallery Courts in the West Building where most of the weekly concerts in its season are held, echoey and with difficult sightlines. For special events, it has the atrium of its East Building — visually magnificent (although its sightlines are also problematic) but acoustically impossible. Sounds reverberate there with booming insistence, muddying ensembles into an agreeable soup — with one exception — the French horn. If you are a horn player, you’ve got to be in heaven there. Horn lines emerge with a glow of burnished opulence.

Members of the St. Petersburg Symphony Orchestra and the National Gallery of Art Orchestra held forth Sunday in a program that, as far as possible, took advantage of the acoustics. Both Bernstein’s Overture to “Candide” and Mussorgsky’s “Pictures at an Exhibition” can be enjoyed purely for their color and splashes of sound and, led by Alexander Titov, the St. Petersburg conductor, the ensemble provided these in abundance.

But for the second (the “Pictures”) half of the program, I moved to the single row of seats on the second level, literally the best seats in the house, where lines could be discerned and some details heard. From there it was clear that Titov was not only whipping up big sonorities but also carving out shapely phrasing and incisive attacks.

The program’s biggest loser in the acoustics battle was the Prokofiev Piano Concerto No. 3. During the occasional moments when Xiayin Wang was on her own, she could be heard to be a splendid Prokofiev pianist, intense, astonishingly agile and accurate. The first movement’s cascades of scales were remarkably even and powered out with an irresistible sense of momentum. Most of the time, however, she and Prokofiev’s vivid personality were submerged in a general mush dominated by percussion and low orchestral voices.

© The Washington Post Company

Monday, October 10, 2011

MS Patients Must Not Use TNF-Inhibitor Drugs

Any person who already has a demyelinating disease must not use one of the anti-TNF (tumor necrosis factor) drugs.  It is strongly contraindicated, meaning the recommendation is that we do not take these medications.   Biological drugs which block the action of TNF-alpha, a pro-inflammatory immune system mediator (cytokine) produced by adipose tissue (ie. fat) in the body and other types of cells, include: Remicade (infliximab), Humira (adalimumab), Enbrel (etanercept), Simponi (golimumab), and Cimzia (certolizumab pegol). 

I first learned of this contraindication from my own rheumatologist at our initial appointment.  She informed me of the different types of drugs approved for RA and why I couldn’t use some of them.  Why is that?  Because I already had MS and didn’t want to risk using one of these disease-modifying anti-rheumatic drugs (DMARDs) for fear that it could exacerbate my MS.

TNF-alpha blockers are known to potentially cause neurological symptoms which may be part of an MS-like syndrome or represent new inflammatory demyelinating disease.  While it is known that TNF-alpha inhibitor drugs can exacerbate multiple sclerosis (MS), there is a question whether this association actually represents an unmasking of pre-existing, pre-symptomatic cases of MS or the development of new demyelinating disease.

Besides learning this important information from my doctor and subsequently reading the “Important Safety Information” for most of the RA drugs, I had not read more than a few individual case studies of patients who developed MS (or something like it) while taking an anti-TNF drug.  Imagine my excitement to find a recent study in the Multiple Sclerosis Journal (published online 3 August 2011) which discusses “Inflammatory neurological disease in patients treated with tumor necrosis factor alpha inhibitors.”  (Solomon AJ, Spain RI, Kruer MC, and Bourdette D.)

The purpose of the study was two part: 1) to present ten new cases of neurological disease associated with the use of anti-TNF drugs, and 2) to present a review of the medical literature (via PubMed) regarding similar drug-related inflammatory neurological disease.

Read this post in its entirety:

Neurological Syndromes May Be Associated with Anti-TNF Disease-Modifying Medication

Saturday, October 8, 2011

Boomer Sooner!!

Today is the 106th annual showdown of the Red River Rivalry. 
University of Oklahoma vs. University of Texas
Go Sooners!!

Friday, October 7, 2011

Marking Time with Parking Permits

As is true for many who are newly-diagnosed, my first year after diagnosis was full of learning experiences. I had a significant relapse that created a need for months of occupational therapy to regain use of my fingers on my left hand. I had another relapse only months after diagnosis and underwent the 5-day Solumedrol treatment twice in one year.

Another thing which happened only one year after I first joined the neurology clinic was that I began tripping. I fell on our stairs a number of times, leaving bruises on my shins. I fell on the sidewalk outside. I was having doubts as to my ability to walk any distance at all, for good reason.

It was early October and the weather was turning wet and chilly. My neurologist suggested that I get a handicapped placard. (Actually I had asked him about getting a placard during our previous appointment, but that was before I told him that I had fallen several times.) He wanted me to be safe. He didn't want me walking on cold, wet (and soon to be icy) sidewalks while tired. That last thing we both wanted was for me to slip in a crosswalk and be hit by a car.

So in October 2006, I applied for my very own disabled handicapped parking permit. In the state of Virginia, these permits are valid for five years. This past week I received my renewed parking permit. Somehow seeing the new expiration date (October 2016) on this valuable piece of plastic makes me realize how long I've been living with MS already.

On one hand, not very long at all. On the other hand, the next time I have to renew my parking permit, it will have been more than 16 years since I first went blind. Just made me stop and think.

Saturday, October 1, 2011

A Library of Health Online

When I was a kid growing up (wow, that makes me sound ‘old’), there was no internet full of endless amounts of information.  You had to go to the library if you wanted to thoroughly research a topic; and oftentimes, you needed to go to a several libraries to complete your work.  You might even have your preference as to which library offered the best resources, which one was easiest to use, or which one made the process successful and rewarding. 

With a grandmother who was a nurse, I had a curiosity about all things medical.  It was not really a hypochondria, but an interest in how the body worked or rather didn’t work sometimes.  Fortunately for me, we had medical and health resources right at my fingertips at home found in two very large encyclopedic books.  Each book was 3-4 inches thick and weighed several pounds.  I took the books from the bookcase in our den often and read the material.  For FUN. 

Now, I read medical journal articles.  I search for information regarding different treatment options currently available and those which may become available upon eventual approval by the FDA.  I read blogs.  I compare notes with other patients like myself, discussing various ways we cope with disease.  I compare the information available from the many patient organizations focusing on MS.  I share what I have experienced and what I learn along the way.  I do all of this from the comfort of my own recliner.

I am a voracious consumer of digital health information online.  No libraries needed.

Read this post in its entirety:

Navigating the Waters of Online Health Information