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Month: September 2008

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

Blowing up my blog and handbags for Lupus!

Blowing up my blog and handbags for Lupus!

OK, I know nothing about code.  HTML code or any other kind of code.  sigh.  I got on the other day to write a post and I thought I would add this widget from a certain Social Networking site that rhymes with Casebook and blammo.  I lost half of my blog.  I got most of it back but I’m still missing some stuff from my sidebar and I can’t remember what it was, lol.  My brain fog is thick lately.  I’ll work on it later when my caffeine level is higher…

Here’s what I set out to write about-

I met this really cool lady while surfing around on YouTube.  Her name is LaLupusLady and she is making videos to promote awareness for Lupus and the fight for a cure.  I really admire her ‘get it done’ attitude, she is amazing.  Here is one of her videos, it was a fundraising event in May for Lupus.  Get into the loop!

She told me there were a couple of really cool events coming up to raise awareness and funding for lupus.  One of them is a silent auction for designer handbags donated by top designers and a few Hollywood stars!  From LupusLa.org:

With your help, a cure is… in the bag!

On Friday, November 7 Beverly Hills will be overrun with “Bag Ladies”—all rallying for the fight against lupus. More than 500 well-heeled women will gather at the Beverly Wilshire Hotel for the 7th annual Lupus LA Hollywood Bag Ladies Luncheon.

Join us for this highlight of the fall social season—a wonderful afternoon of friendship, fun and fashion, centered around a silent (but very lively!) auction of coveted handbags donated by the top boutiques in the city, as well as directly from the collections and closets of Fendi, Chanel, Hermes, Sharon Stone, Jennifer Aniston and Julia Roberts, to name a few. A runway show will cap off festivities… designers and celebrity models to be announced!

Honoring Dr. La-Doris McClaney
Lupus LA Woman of Achievement Award

This year at the luncheon the Lupus LA Woman of Achievement Award will be presented to Dr. La-Doris McClaney, a motivational speaker, writer and lecturer, and our first African American honoree. La-Doris spearheads her family’s longstanding tradition of charitable giving to a multitude of worthy causes, and when she found out her close friend was battling lupus, she generously lent her name and efforts to our cause. Lupus LA is proud and excited to recognize La-Doris McClaney.

It sounds like fun!  I am so addicted to collecting purses, although mine are more likely to have store brand name tags than designer tags…it’s all good.  I’m a little jealous that I won’t be there (a lot a bit) but if you live in the LA area, check it out.  It’s for a great cause and you could snag a handbag that came straight out of Julia Roberts closet!  I don’t care what anyone says, Pretty Woman is one of my favorite movies 🙂  If you see LALupusLady give her a hug, she is doing an amazing job at raising awareness for Lupus.  Wait, maybe just give her a handshake, we don’t want to scare her with a bunch of people heading for her with their arms wide open, LOL!!   For more info on the events coming up in the Los Angeles area check out LupusLA.org.

OK, now I’m going to try and fix my blog and figure out what the heck it was that I blew off the sidebar…

Til next time

You can find all the info at LUPUSLA.

What’s up

What’s up

I’ve been meaning to post here for the past 2 days, but I have been flaring like crazy.  It’s 1:30 in the morning here and it’s the first time in the past 48 hours that I feel almost normal.  I know that there are so many people who have different autoimmune diseases, and other diseases for that matter, and I don’t know how people do it.  How do you get up in the morning and get ready and go about your day?  I want that back in the most desperate way.  I do realize that this is depression talking, and that things WILL get better, but for now I just can’t see the light at the end of the tunnel.  I still have a month left before I see the neuromuscular doc for my biopsy results.  Has anyone had to wait 2 months for results???  So for now, I just keep taking 2700mg of neurontin a day that does absolutely nothing and wait.

OK, enough with the negative venting!  The Big C and I were talking about getting back into shape.  I’m limited in what I can do in the way of excercise, and neither one of us ‘likes’ to work out…So, we have a WII.  And the kids are always playing games on it, but if we could steal some time on it we want to try out WII fit.  I was reading my fav blogs today and came across this post from Marijke from Help My Hurt and I had to laugh. Check out her blog, she has some really great information for anyone with chronic pain.

And that brings me to National Invisible Chronic Illness Awareness Week.  I wanted to write about this on Monday, see above, lol.  My bloggin friend Connie will be speaking this week and I sure hope I didn’t miss it.  But if I did, I heard that it will all be archived, so that is cool.  I will be checking it out tomorrow, God willing, I WILL NOT BE FLARING SO HARD!!!  There.  That will work I’m sure.  There was something else I wanted to write but my head is full of mush so I’m signing out.  Peace.

(snail) image: FreeDigitalPhotos.net

It’s been a while…

It’s been a while…

since I’ve posted anything! The bean says that ain’t cool, and you can tell by the goggles-she’s cool.  These last few weeks have been full of flares and sleep.  Not a lot of fun, and sure not postworthy unless I wanted to get on here and whine-aaaaarrrrgh!

I’m gonna whine a little anyway… he he  I did go and get my biopsies done. We had to go to a bigger hospital than what we have here.  It took 5 months to get in to see this neuromuscular surgeon.  So frustrating.  My burning symptoms have just gotten worse and worse, and even though I knew that just by having the punch biopsies done my burning wasn’t going to go away, I was still frustrated.  No one should have to wait 5 months for an appointment.  When the day came I was so nervous I couldn’t eat anything, so by the time we got there I was starving. We were running late because traffic was really heavy and even though we left 2 hours before the appointment and the drive is an hour and a half, we just barely made it on time.  When we got up to the right floor and found the desk, I handed the receptionist this form that they sent me to fill out prior to the appointment.  She stared at me with an expectant look on her face.  “yeesss?” (I blame my rudeness on low blood sugar)  She said “Didn’t you receive the packet we mailed out to you?”  Ah, shit.  It’s five minutes past the appointment time and she says, “Don’t worry.  Just fill out as much as you can so the medical assistant doesn’t get mad.” WTF?  So, she hands me this packet that’s about half as thick as the phone book and I glance to the left of me where another woman was checking in and she was just reaching out to grab the ‘packet’.  Somebody must’ve been sleeping on mail-all-the-packets-out day.  So we found a seat and I started answering a million questions while my stomach rumbled and grumbled.  I didn’t have any addresses for my docs, or fax numbers and such, and then I answered every question pertaining to my health known to man.  I actually finished it and turned it in.  Finally the medical assistant called me back, and she was nice ( I finished my packet) and we got situated in the room.  When the doc came in he looked tired and cranky and he said “So, they forgot about you.  I’ve been sitting in my office reading for the last hour.”  Turns out the front desk forgot to check me in on the computer and me and the doc both were sitting there for an hour.  Me frantically filling in questions and him reading.  By now I’m so hungry I’m shaky.  So the doc is really cranky and all I can think about is getting the heck out of there so I can eat.  He tells me his partner is going to perfom the biopsies and he leaves the room.  So I’m laying on the table and I’m dreaming of taco bell, jack in the box, biiiig milkshakes, aaaggghhh.  The Doc decides to do them on my left leg because he said that was the worst leg when it came to all of the manual tests-push, pull, poke with a pin, etc.  His partner tells me that she is going to use sterile technique to help ensure no infection will come about.  She says that we have to be careful of infection.  I watch her set up the tray and glove herself and drape me, and what she doesn’t know is that my profession is a medical assistant and had I done that type of sterile technique at work I would have been fired.  It was all wrong!  She leaned her body over the field, no sterile gloves, ugh, and so on.  Oh gawd, I’m already thinking of getting the worst staph infection in the history of, or MRSA or anything completely irrational.  She had me lay on my side and she injected my hip first with a numb-er, I think she said lidocaine, and that hurt like a bitch.  It burned and I squeezed The Big C’s hand and laughed which is what I always do when I’m nervous..it’s like a nervous tic only way more socially unacceptable.  The rest I couldn’t see from my vantage point but C said it was way cool.  This little tool she pushed up against my skin and twisted and twisted. Then she pulled it out and used teeny tiny tweezers and scissors to grab it and put it in a jar.  She did the same on my lower leg above my ankle which burned a million times worse than the hip area.  When I asked her why she said because there is less fat there, more fat up on my hip.  Thanks.  That was it.  She bandaged me up and told me not to get it wet for 3 days.  It was 100 degrees that day and I needed a shower.  So we did alot of taping so I could take cool showers.  End of story.  It has been WAY too long since I blogged.  My next post with be shorter and sweeter 🙂  I miss the blogoshpere, I’m back baby!!!  I just have to stay out of the depression rut that comes with being in pain for too long of stretches.  Man, it’s a killer.  I’m trying to stay happy even if I have to fake it.  If you walk around smiling, it really does help, even if you look like an idiot, it wards of the blues.  Usually.  Sometimes.  Well, it worked today anyways.  I need to thesaurus the word anyways, I use it too much.  Regardless, I will use that word more often.  BTW, anyways wasn’t in there.  It’s anyway.  sigh.

It’s good to be back, until next time, with no whine!

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