Hysterical Exacerbations, and by hysterical I don’t mean ROFL

It’s odd that in my life with MS that something odd happens. In fact the reason that I rarely write about my MS is that there is generally nothing interesting to say. But last night something happened. Something new. Something weird.

Last night we were having one of “those” nights as parents. The kids were not listening , not minding, talking back, on our last nerve. Every parent has had one of those nights, usually 100s of times. We loved them but OMG they needed to stop making so much noise!  So finally we had reached our limit and we both yelled at them and said Go To Bed, No Ice Cream Tonight!

Yes I was stressed but in than normal my kids are driving my crazy stress. Earlier the Dr and I had argued over an upcoming family vacation but just the typical I want to do this, he wants to do that – nothing major. We bicker to reach agreement. It’s our way.

So as I’m standing at Puddin’s bedroom door fussing at her that we had been planning to do fun things before bedtime but now that’s a wash.. I step away and notice numbness in my right big toe.  My right big toe is where any residual numbness always pops up now in heat or times of fatigue – it’s my barometer of sorts. But this isn’t just the faint numbness I usually feel that warns me I’m overdoing it. This is full on rubber-band around the toe pins and needles. Instantly – not there one minute, there the next. Things this numb are very very rare and generally make me call the neuro.

We got the kids to bed and thankfully they stayed down. I went and sat down with a glass of wine and did my best just to clear my mind. I took my Imuran early – even though I know it has nothing to do with symptoms, only prevention. I guess it made me feel like I was doing something. I thought about digging up my store of old Prednisone but didn’t do it. Instead I vegged on the internet while the Dr did the supper dishes.

Sure enough, an hour later it was gone. Completely. Gone.

I stood up and it was as if it had never been numb.

So a moment of parental stressed caused a temporary exacerbation? Signs that I’m actually going bat-shit crazy? I don’t know.

I’ve looked I can’t find anything on anything like this.

Yes I know stress is linked to flair ups but it’s supposed to be “life event” stress – not “my kids won’t stop talking” stress.

Oh dear.. if this keeps up I can just hear me yelling now…

“You need to mind Mama and do as your told or Mama’s foot will go numb – and you don’t want Mama’s foot to go numb! Trust Me.”

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MS Awareness Week: Video 1

Totally reusing this from last year but hey – it still works!

It’s Time Get Stem Cell Research Back on Track

President
Obama has indicated that he plans to overturn the funding restrictions
for stem cell research by signing an Executive Order. 
Currently, under the policy set by President Bush, federal funding for
stem cell research can only be applied to human embryonic stem cell
lines derived prior to August 9, 2001.  If President Obama signs an
Executive Order, then many new funding opportunities will be available
for stem cell projects because the current funding barriers will be
removed.

 

Click here to send President Obama a quick message thanking him for his support of stem cell research. 

 

Getting this
research back on track in the United States will provide jobs and
economic boosts for the companies who were on the leading edge of this
research before it was halted.The time is now to make this important change in policy.  Because
stem cells have the unique ability to develop into many different cell
types in the body, they are of great value to scientists and
researchers looking for new ways to help cure diseases.

Success for ADA Bill

Disability rights and protections reached a new milestone when Congress passed the ADA Amendments Act of 2008 (ADAAA) on Wednesday, September 17. The bill is now awaiting the signature of President Bush.

Signed into law in 1990, the intent of the original ADA bill – to provide inclusion and equality in the workplace – has slowly disintegrated as protections have been repeatedly ignored due to narrow interpretations by the court. The strongly supported, bi-partisan ADAAA restores the original law with a more fair and broad definition of "disability," and ensures that individuals in need of protection under the law will not be shut out.

The ADAAA is of great benefit to the multiple sclerosis (MS) community, which experienced setbacks and barriers to protection under the original law due to misguided court decisions. People with MS and other chronic ailments had, in some cases, been denied ADA protection when courts overlooked the severity of their conditions because they were treatable by medicine or other measures.

Today, the ADAAA will help ensure that there will no longer be discrimination against individuals with disabilities in the workplace. Thanks to your help and activism, we can celebrate a big victory in the passage of the ADA Amendments Act of 2008.

McCain wants to take away your employer paid insurance benefit

Reposting this article from Brass and Ivory because I can’t believe this issue isn’t getting the kind of play it deserves. I really really don’t care if Palin was for or against a non-existent bridge in Alaska – I wish she would tell the truth about it – but ultimately it’s only relevance to me is as a reflection of her character.

This kind of stuff though … this directly effects every single one of us. So can we stop talking about lipstick and start talking about this?

The very foundation of McCain healthcare plan calls for your employer to STOP providing group insurance for you and your co-workers and if they don’t – you’re going to get a personal tax increase.

See he doesn’t think that healthcare benefits are a good idea. He wants you to have to go out and shop for healthcare insurance like you do your car insurance. He has some half brained idea that creating an open market for healthcare insurance will be the answer (because open markets worked so well for the mortgage industry)- and to make it happen he is willing to PENALIZE YOU PERSONALLY with HIGHER TAXES if you are receiving employer based healthcare.

This article from the NY Times says it all

McCain’s Radical Agenda by Bob Herbert

Talk about a shock to the system. Has anyone bothered to notice the radical changes that John McCain and Sarah Palin are planning for the nation’s health insurance system?
These are changes that will set in motion nothing less than the dismantling of the employer-based coverage that protects most American families.
A study coming out Tuesday from scholars at Columbia, Harvard, Purdue and Michigan projects that 20 million Americans who have employment-based health insurance would lose it under the McCain plan.
There is nothing secret about Senator McCain’s far-reaching proposals, but they haven’t gotten much attention because the chatter in this campaign has mostly been about nonsense — lipstick, celebrities and “Drill, baby, drill!”
For starters, the McCain health plan would treat employer-paid health benefits as income that employees would have to pay taxes on.
“It means your employer is going to have to make an estimate on how much the employer is paying for health insurance on your behalf, and you are going to have to pay taxes on that money,” said Sherry Glied, an economist who chairs the Department of Health Policy and Management at Columbia University’s Mailman School of Public Health.
Ms. Glied is one of the four scholars who have just completed an independent joint study of the plan. Their findings are being published on the Web site of the policy journal, Health Affairs.
According to the study: “The McCain plan will force millions of Americans into the weakest segment of the private insurance system — the nongroup market — where cost-sharing is high, covered services are limited and people will lose access to benefits they have now.”
The net effect of the plan, the study said, “almost certainly will be to increase family costs for medical care.”
Under the McCain plan (now the McCain-Palin plan) employees who continue to receive employer-paid health benefits would look at their pay stubs each week or each month and find that additional money had been withheld to cover the taxes on the value of their benefits.
While there might be less money in the paycheck, that would not be anything to worry about, according to Senator McCain. That’s because the government would be offering all taxpayers a refundable tax credit — $2,500 for a single worker and $5,000 per family — to be used “to help pay for your health care.”
You may think this is a good move or a bad one — but it’s a monumental change in the way health coverage would be provided to scores of millions of Americans. Why not more attention?
The whole idea of the McCain plan is to get families out of employer-paid health coverage and into the health insurance marketplace, where naked competition is supposed to take care of all ills. (We’re seeing in the Bear Stearns, Fannie Mae, Freddie Mac, Lehman Brothers and Merrill Lynch fiascos just how well the unfettered marketplace has been working.)
Taxing employer-paid health benefits is the first step in this transition, the equivalent of injecting poison into the system. It’s the beginning of the end.
When younger, healthier workers start seeing additional taxes taken out of their paychecks, some (perhaps many) will opt out of the employer-based plans — either to buy cheaper insurance on their own or to go without coverage.
That will leave employers with a pool of older, less healthy workers to cover. That coverage will necessarily be more expensive, which will encourage more and more employers to give up on the idea of providing coverage at all.
The upshot is that many more Americans — millions more — will find themselves on their own in the bewildering and often treacherous health insurance marketplace. As Senator McCain has said: “I believe the key to real reform is to restore control over our health care system to the patients themselves.”
Yet another radical element of McCain’s plan is his proposal to undermine state health insurance regulations by allowing consumers to buy insurance from sellers anywhere in the country. So a requirement in one state that insurers cover, for example, vaccinations, or annual physicals, or breast examinations, would essentially be meaningless.
In a refrain we’ve heard many times in recent years, Mr. McCain said he is committed to ridding the market of these “needless and costly” insurance regulations.
This entire McCain health insurance transformation is right out of the right-wing Republicans’ ideological playbook: fewer regulations; let the market decide; and send unsophisticated consumers into the crucible alone.
You would think that with some of the most venerable houses on Wall Street crumbling like sand castles right before our eyes, we’d be a little wary about spreading this toxic formula even further into the health care system.
But we’re not even paying much attention.

Something You Can Do To Make A Difference For MS Right Now

Members of the House of Representatives are signing on to a letter requesting that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs (CDMRP). This Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D. (R-TX).

If your representative is not on the list, click here to send a quick reminder.
Dear Colleague Signers as of March 14, 2008

• Tammy Baldwin, (WI-2)
• Howard Berman, (CA-28)
• Leonard Boswell, (IA-3)
• Michael Burgess, (TX-26)
• Christopher Carney, (PA-10)
• Lois Capps, (CA-23)
• Russ Carnahan, (MO-3)
• Susan Davis, (CA-53)
• Bill Delahunt, (MA-10)
• Vernon Ehlers, (MI-3)
• Keith Ellison, (MN-5)
• Philip English, (PA-3)
• Bob Filner, (CA-51)
• Barney Frank, (MA-4)
• Bart Gordon, (TN-6)
• Ruben Hinojosa, (TX-15)
• Tim Holden, (PA-17)
• Hank Johnson, (GA-4)
• Patrick Kennedy, (RI-1)
• Dennis Kucinich, (OH-10)
• James Langevin, (RI-2)
• Sander Levin, (MI-12)
• John Lewis, (GA-5)
• Frank LoBiondo, (NJ-2)
• Edward Markey, (MA-7)
• Jim Marshall, (GA-8)
• Carolyn McCarthy, (NY-4)
• Jim McDermott, (WA-7)
• Brad Miller, (NC-13)
• Harry Mitchell, (AZ-5)
• Dennis Moore, (KS-3)
• Tim Murphy, (PA-18)
• Collin Peterson, (MN-7)
• Todd Russell Platts, (PA-19)
• Rick Renzi, (AZ-1)
• Bobby Rush, (IL-1)
• Janice Schakowsky, (IL-9)
• Allyson Schwartz, (PA-13)
• Pete Sessions, (TX-32)
• Christopher Shays, (CT-4)
• Vic Snyder, (AR-2)
• Edolphus Towns, (NY-10)
• Henry Waxman, (CA-30)
• Peter Welch, (VT-At Large)
• David Wu, (OR-1)

Multiple Sclerosis Awareness Week: MS and Motherhood

Here we are with the latest entry into the MS Awareness week vide blog. Today the topic is Motherhood. Pregnancy is one of the big categories of questions that I get asked about by people who want to know about MS so it seemed like it needed it’s own topic. I went outside today for better light and as a result was all kind of squinty but at least I managed to only have one incident of bang obsession this time.

Again I’ll state my disclaimer that I’m just a girl on the internet talking about her case of MS. I’m not smarter or more knowledgeable than the professionals in your life. I’m talking about my experiences, take them as just that and nothing more.

YouTube – Being a Mom and Having MS

Melissa’s Facts on MS

Couple of things I should note before you watch the vide:

1. I have MS but that doesn’t make me an expert. Never take my word over your doctor, lawyer, mother or best friend’s sister-in-law’s neighbor. I’m just some chick on the internet.

2. The lighting in my office in the morning is even worse than it is in the afternoons. I will be exploring other venues for the next post.

3. I seriously need to get my bangs cut because clearly I can’t stop messing with them. What is up with that?

4. Huge Thanks to Fussy  and Her Mad Hat today for posting links to this blog on her website today! Your rock!

YouTube – MS Blog Entry 2 – Melissa’s Facts on MS

My Face Of MS (Multiple Sclerosis)

In recognition of National MS Awareness week I’m going to be video blogging the rest of the week about MS, particular my story with MS.

I’ve covered this before on this blog but for those of you who are new, I have MS. I was diagnosed 11 years ago this month. MS is a part of me, part of my everyday life but it doesn’t define me. I don’t blog about it alot because it’s one those things that’s kind like having blue eyes, that’s part of me too but I don’t talk about it all the time.

So here’s my first MS Video… 6 minutes of me talking about me! Whoot that was fun!

 

YouTube – My Face of MS