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Is it Friday yet? Boogers, videos, and random thoughts…

Is it Friday yet? Boogers, videos, and random thoughts…

What a weird week, it’s only Tuesday, but it feels like it’s been such a long week.  We were going to go out for a drive yesterday to take some pictures but the Bean got sick and she is too funny when she has a cold.  She doesn’t speak in sentences yet, but she does have a few words.  One of her FAVORITE words is Elmo.  She says elmo over and over and over…you get the picture.  So yesterday she grabs one of her elmo toys and says ‘elbow’,  over and over as a giant snot bubble bobs up and down in slow motion from the tip of her nose.  I thought I was going to lose it.  I can handle kid poop, vomit, blood, pretty much anything, except for boogers.  I dry heave if I see a kid picking his nose.  Those people, you know the ones, they blow their nose and then have to open the kleenex and insect it, yup, if I see that I start screaming and then pass out.  So anyway, I have to deal with the bobbing bubble and every time she says ‘elbow’ it gets bigger and bigger.  I guess there’s worse things in life than having to pop a snot bubble with some kleenex while trying to keep your coffee down, but at the time I couldn’t think of anything.  I know, I’m a baby.  But, it’s OK.  I am a really strong woman in all other areas, I figure I deserve to be weak about something and about snot is totally acceptable in my book.  cmon!  OK, that was way too many words in this post having to do with a toddler and her body fluids.  Well, just a few more words….this morning when she woke up, she popped up in her crib and said, “HI!” just like every morning except this particular one, half of the hair on the left side of her head was stuck to her nose….
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I am blessed to get to see this smiling face each morning when I wake up, snot bubbles or not.  She really grounds me.  She doesn’t know it, but she is an integral part of my coping when it comes to living with chronic illness.  I’ve said it before, she is my pain pill.

The other day I did a search for some videos on RA.  I’ve added a few to my vodpod on the page here if you’d like to check them out.  I’m still trying to find a good video on small fiber neuropathy.

Nap time for the bean and I’m going to join her.  Until next time

Michelle

A little privacy please

A little privacy please

Earlier today I’m sitting out back and the woman who lives in the house behind us is watching me.  I can tell because I feel that feeling you get when someone is watching you and sure enough, when I turn to look, her head disappears in her window.  I’m in my bathrobe at 4 in the afternoon with a case of the most ridiculous bedhead and I’m crying.  I see her and I wonder, what is she thinking?  Let me backtrack..

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Arthritis Act-Floor Vote Today! Please Call Your Reps this am!!!

Arthritis Act-Floor Vote Today! Please Call Your Reps this am!!!

OKaayyy, I totally slept in and almost missed this, flu has really gotten to me.  Enough about me, time is of the essence so I’m just copying and pasting from my email…

Arthritis Act Scheduled for Floor Vote Today!

Call your representative this morning

The US House of Representatives has scheduled a vote expected today, on the House floor on HR 1283, the Arthritis Prevention, Control and Cure Act.

Thanks to all of you for your hard work these past 5 years, but your work is not yet done.  We need to make sure that if a recorded vote is requested and taken on this bill that 2/3 of the Members of the US House of Representatives vote YES.  Being a co-sponsor of the arthritis bill does not guarantee a Member of Congress will vote YES when it reaches the floor, nor does a non-co-sponsor indicate he or she will vote against it.  For those of you with Members of Congress who have not co-sponsored but have indicated they would vote yes when it reaches the House floor, now is their chance to support the bill.

PLEASE CALL YOUR REPRESENTATIVE THIS MORNING AND ASK THEM TO VOTE YES ON HR 1283, the Arthritis Act.

Offices will be open from 8:30 am- 6:00 PM EST.  We need all of you to please call the Capitol switchboard at (202-225-3121) or call your Member directly and ask him/her to VOTE YES tomorrow on the Arthritis bill, HR 1283.

Copy and pasting over.  I’m going to add the link to find the number for your own representative here.  It’s the action alert page and just type your zip code in the box on the right and it’ll tell you who it is and all of their stats.

Weee hooo!  Let’s keep our painful fingers and toes crossed!  OK, I’m going to go call

Michelle

Arthritis Bill to be Marked up in Committee Today

Arthritis Bill to be Marked up in Committee Today

The Arthritis Prevention Control and Cure Act, HR1283 is scheduled for markup today before the House Energy and Commerce Committee. I totally missed the boat on the opportunity to call my congressional representative and have my voice be heard. I got the alert in my email yesterday and this flu bug has got me so down, I put off checking my email… I’m really upset that I missed this. All I can do now is pray. So many people have put in such hard work with their efforts to have their voices be heard. I really hope that it pays off. I want to thank every one of you that wrote to your reps and told your stories.

From the Arthritis Foundation email:

The Arthritis Foundation has been working closely with our Congressional sponsor and champion, Rep. Anna Eshoo (D-CA), to address concerns and reach consensus with other members of the Committee.  At this point in time, although the bill has been formally ‘noticed’ (at the above link) there are still ongoing negotiations to avoid a non-arthritis controversial amendment that may be offered.

This is the first piece of bi-partisan comprehensive arthritis legislation in more than 30 years. The Arthritis Foundation, through its volunteers and staff throughout the nation, and in Washington DC has been fighting for this bill for over 5 years.  As an arthritis advocate, you have been instrumental in helping to build support for this bill through your tireless efforts at letting your Member of Congress know how important it is to support this bill.  THANK YOU!

This legislation, if enacted, will improve research and public health for adults and children with arthritis and it will help reduce the treatment barriers for children with arthritis.  The bill still requires House passage which is not guaranteed due to the limited days Congress is in session – we will be alerting our grassroots and our Arthritis Ambassadors to ensure action is taken before Congress adjourns for the year.  We will be working closely with our Congressional sponsor, Anna Eshoo to make a strong push to ensure the bill is scheduled for floor action before final adjournment and have been in continuous contact with our Senate sponsors with a corresponding strategy.  Although we still have hurdles to overcome before the President signs this bill into law, we will be making significant progress tomorrow.

In order to ensure “smooth sailing” at the Committee “mark-up” on Tuesday, please call your Member of Congress and urge support of the Arthritis Prevention Control and Cure Act, HR 1283 without any controversial amendments in Tuesday’s mark-up.

After looking at the schedule this should be going on now, or just ending.  Let’s keep our fingers crossed.

Michelle

ADA Amendments Act of 2008

ADA Amendments Act of 2008

Woot Woot!!! How’s that for an educated sentence?  The ADA Amendments Act of 2008 passed.  What does this mean for you and me?  Let’s have a read

** The ADA Amendments Act of 2008 (S. 3406, passed by the Senate unanimously on September 11, 2008):

  • Overturns the erroneous Supreme Court decisions that have eroded the protections for people with disabilities under the ADA, restoring original Congressional intent.
  • Rejects strict interpretation of the definition of disability, and makes it absolutely clear that the ADA is intended to provide broad coverage to protect anyone who faces discrimination on the basis of disability.
  • Strikes a balance between employer and employee interests.
  • Prohibits the consideration of mitigating measures such as medication, prosthetics, and assistive technology, in determining whether an individual has a disability.
  • Covers people who experience discrimination based on a perception of impairment regardless of whether the individual experiences disability.
  • Provides that reasonable accommodations are only required for individuals who can demonstrate they have an impairment that substantially limits a major life activity, or a record of such impairment. Accommodations need not be provided to an individual who is only “regarded as” having an impairment.
  • Is supported by a broad coalition of civil rights groups, disability advocates, and employer trade organizations.  **

Congress overturned two Supreme Court cases that narrowed the scope of the ADA.  It’s now made clear that bodily functions such as immune system, digestion, brain, circulatory functions and more can be just as disabling as not being able to see, hear, or walk.  Here’s the biggie for me-Congress has said “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” This is a first!!!

I’m not in remission although I pray for it each day.  But the nature of the beast when it comes to autoimmunity for me personally is having really, really bad days then having what I would call a ‘good day’.  Before I got sick I would NEVER had called it a ‘good day’ for just having some pain while climbing the stairs instead of needing help, or having to lay down for an hour because of extreme fatigue as opposed to sleeping for 20 hours straight on a ‘bad’ day when the body says g’nite only to wake up hurting so bad you pray for sleep again, or just having to take one pain pill that day, or the burning is at a 4 on the pain scale, yay!!  But that is an extremely good day and they are few and far between for me.  Also having an autoimmune disease means taking meds that compromise our immune systems leaving us wide open for every cold, flu and nasty infection that comes down the pike.  I have to take them every day, no matter what.  If I didn’t my body would go into attack mode…it sucks.  That’s what it all boils down to is, it sucks.

(OK, now I’m a little off topic and rambling but my typing fingers have a mind of their own tonight.)
It’s bad enough to have a lifelong, chronic, invisible, misunderstood, disabling, painful, depressing, incurable, “what’s it called?” disease, and to top it off, when your body says”That’s enough.  I’m shutting you down.” and you can’t work, disability tells you that you are not sick enough.  HA!  That pisses me off to no end.  The first time I filed for disability I was nixed within 3 months.  I got a letter telling me that I was well enough to work 40 hour weeks.  As soon as I read that sentence, I started laughing.  It started out slow, and it built up and built up until I was chortling like a maniac.  The Big C was getting concerned (I’d say scared, but he say’s he doesn’t get scared, hrmph)  At the time that I received the letter I was using a walker to walk and a wheelchair if we were going to be out for any length of time.  I had just started taking plaquenil and it takes time to start working.  I never thought there would be a day when I would be fighting to be considered disabled.  I don’t want to be disabled!!!!! I want to rewind time and be healthy.  Wow, how did I get off on this tangent??  This post was supposed to be good news…I guess good news with a little bitching thrown in.

That’s it for me tonight.  I’ve got the flu, LOL!  That’s probably why I’m so snippy.  Until next time

**taken from the website Committee on Education and Labor, Us House Of Representatives

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