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CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).

After two years without treatment, I had an appointment at 1:30 this past Tuesday to meet with a new rheumatologist regarding my SLE. That is to say, I was supposed to have such an appointment. I was scheduled for such an appointment. But it didn’t take place, because the doctor’s assistant called at 9:30 that morning to tell me that my case was “too complex,” that he was “out of his depth,” and that I should call someone else.

Isn’t that what we used to say when we were kids? Call somebody who cares!

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CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).

I got sick on March 9, and I can’t really say that I’m all better.

I also can’t say that I’m surprised. Lupus is ugly. Things hang on.

What has surprised me is how difficult it’s been to get medical care this time around. Since my last flare, I moved an hour inland and we became a single car family. I also have a son in half-day kindergarten, and I’m only just getting to the point that I think I could stay awake and keep the pain quiet long enough to drive to my old doctor and back. When I was coughing up blood, doubled over from abdominal pain, running fevers over 103 degrees—that wasn’t true. I needed to find a new primary care physician and a new rheumatologist, get my records transferred, and start getting some help. But it’s not that simple, and help is still a fair distance away.

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Tue Mar 02, 2010 at 06:00 AM PST

Cheers and Jeers: Tuesday

by andsarahtoo

From the GREAT STATE OF NEW HAMPSHIRE...

Good morning, squeeing people of the kiddie pool! My name is Sarah, and I will be your guest lifeguard for today. For those of you who don’t know me, I’m the present organizer of Chronic Tonic, the Thursday night diary series/support group for people living with chronic illnesses and conditions, and jgilhousen and I will be co-hosting the Wednesday night incarnation of KosAbled, the new diary series for people living with disabilities. Many of you may also know me from Twitter.  I’m not in Cheers and Jeers very often, because it’s way early and befoar kofee I doant think to gud. However, when my good friend and business partner Spedwybabs asked me to take a turn on Bill’s vacation, I said no was totally thrilled to be able to spend time here. With you. Early in the morning. Before coffee.

Squee.

Anyway, I hope you all enjoy yourselves. Please remember to tell Spedwybabs what a good job I did so she doesn’t hit me so I am invited back to splash around next time.

Without further ado: Cheers and Jeers starts in There’s Moreville… [swoosh] RIGHTNOW! [Gong!]

Poll

Once and for all: which is better?

8%9 votes
9%10 votes
44%45 votes
37%38 votes

| 102 votes | Vote | Results

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Late on an evening just before Christmas, an email popped into my inbox that read, in part, as follows:

Andsarahtoo, I am Sara R from Daily Kos … and my sister and I have been making a series of quilts… We're working on two -- for Timroff and for Sol Fed Joe -- and the one after that will be for you, if that is okay.  I'll post a message collection diary for your quilt on Monday.

Okay? Okay?? I could hardly wait. Of course, I had read about the community quilts here and there, and seen pictures. And yes, I’m ill—I have been sick since late 2006 with systemic lupus erythematosus. My primary presence here at dKos for the last several months has been as scheduler and lead cheerleader at Chronic Tonic, the support group for people with chronic illness and their caregivers that meets every Thursday night at 9 pm.  But I’d never thought I would wind up on the list to receive one of these beautiful quilts.

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Sat Feb 13, 2010 at 05:28 PM PST

NFTT: Saturday Night Haiku!

by andsarahtoo

Oh Hai, It’s Me Again

It’s very simple:
send a hundred thousand bucks
or haikus go on.

The above haiku a collaboration with GayIthacan.

Value Added Bonus!

It’s for a good cause:
care packages for troops
and Sped shushing up.

Here’s The Problem

I promise you this:
we’ll know no peace til goal’s met.
It’s just how she rolls.

Not Really, But I’m Totally Starting To

Please give what you can.
Our soldiers deserve our best.
And I hate haiku.

Obligatory Mockery of Sped’s Stature

I’ll be in Vegas
packing boxes for our troops.
I’ll be with an elf.

Why Sped Should Behave

If she misbehaves,
one lucky soldier gets her
in his care package.

HALP

Spedwybabs: tiny
but mighty. I am afraid.
Give, or she hits me.

She Will Keep Making Me Do These Diaries...

Come below the fold.
Click the donation button.
End my suffering.

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Mon Dec 28, 2009 at 03:51 PM PST

NFTT: Haiku Night!

by andsarahtoo

Good evening, Kossacks.  Spedwybabs asked sweetly if I would do a Netroots for the Troops diary, and I happily agreed.  (Those that know the pint-sized but formidable Sped understand that this language is intended to disguise my shame at the fact that I was so deeply frightened when she threatened me.)  

I'm not a prolific diarist, but some of you may know me from Chronic Tonic. I’m also involved with Progressive PST, with Spedwybabs and StrandedWind, and many of you may know me without realizing it from Twitter.

I agreed to do an NFTT diary for several reasons: first, because I fundamentally believe that supporting the troops is right and necessary; second, because I am looking forward to participating in the packing of boxes at my first-ever Netroots Nation next summer; and third, because I am, as I said, deeply frightened of Sped.  But that’s last on the list. I swear. My special gifts are snark, light verse and a lasagna you wouldn’t believe.  I am sharing two of the three with you tonight below the fold.

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Good morning, GUSsacks.  I don't know how much babysitting I will be doing this morning, as I feel kinda lousy, but I wanted to put the diary out there.

GUS (Gave Up Smoking) is a self-sustaining community support diary for Kossacks who have quit smoking or considering the idea. Any supportive comments, suggestions or positive distractions are appreciated. If you are quitting or thinking of quitting, or have quit, please -- join us!
You can also click the GUS tag to view all diary posts. We also maintain the GUS library where there are many helpful links.  

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Thu Oct 29, 2009 at 05:40 AM PDT

GUS: Haiku for the Non-Smoking

by andsarahtoo

GUS (Gave Up Smoking) is a self-sustaining community support diary for Kossacks in the midst of quitting smoking. Any supportive comments, suggestions or positive distractions are appreciated. If you are quitting or thinking of quitting, or have quit, please -- join us!

You can also click the GUS tag to view all diary posts.

Wanna write a diary?  Wanna host an open thread?  Sign up in the butt can (tip jar) for your preferred date and time!

Good morning, faithful GUSsacks!  I have missed you dreadfully.  I am crazy-busy between school and other projects at the moment, and I have not been free to check in as much as I might like.  However, I’m here this morning, waxing snarkily poetic about my quit smoking experiences.  Should I feel the muse strike, I might edit this diary—and I would be happy to edit to add contributions from like-minded, pre-coffee GUSsacks who also have no business touching a keyboard before the caffeine hits.

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Got a Happy Story is a community gathering every Monday night where we share stories large and small that have put a smile on our face. The Happy Story diary exists as a way to anchor the community in hope and comfort while we do the hard work of maintaining a permanent Democratic majority.  Everyone and all sorts of stories and pictures are welcome. Consider this an open thread.

Yesterday, I got a call from my ex that one of our dogs, Jasper—one of two we got from the same litter eight years ago--wasn’t going to make it.

Before everyone who is presently thinking that andsarahtoo just doesn’t get the point of Happy Story, hear me out.

I drove the hour out to the house to sit with one of my teen stepdaughters and my two young sons while my ex took the dog and my other stepdaughter to the emergency vet.  The house is a neighborhood hangout for most of my stepdaughters’ friends, so one girl stopped in to sit with us.  By the time my ex returned, emotions were running pretty high, and we all stood out in the yard sniffling in the dark while the grave was prepared.

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Sat Oct 17, 2009 at 05:39 AM PDT

GUS: This Week in Not Smoking.

by andsarahtoo

GUS (Gave Up Smoking) is a community support diary for Kossacks in the midst of quitting smoking. Any supportive comments, suggestions or positive distractions are appreciated. If you are quitting or thinking of quitting, please -- join us!
You can also click the GUS tag to view all diary posts, or access The GUS Library at dKosopedia for a great list of stop-smoking links. Check it out!

I signed up for this slot the other day and promptly fell off the schedule, so... wow, I hope some people come to visit lonely old me here in a little-announced GUS diary.

On Monday, I spent the school holiday at home with no kids.  I read, I napped, I watched TV—and I was able to have a relaxing day at home in my jimmies without cigarettes.  By the time the kids got home (wound for sound, I might add) at seven o’clock, I was definitely feeling the effects of a lazy day doing nothing... and it should be noted that I never thought that I might feel more relaxed if I had spent the day smoking.  Relaxation does not come from nicotine or from the ritual of smoking.  It can come from occasionally having a day wherein one doesn’t have to watch "Dora the Explorer" twice before lunch.

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Good morning, GUSsacks.  Due to my mind's willful attempt to repress my Wednesday morning PTA obligation, I volunteered for this diary slot and forgot that I had to leave the house at 8:30.  However, I will be in and out until then, and I will update the diarist schedule as needed upon my return... provided that I don't wind up in the slam for taking my aggression out on one of the problem mothers.  It's kind of a crap shoot, but I'll do my best.

You will notice at the end of this diary that there are no future diarists.  Please don't let GUS has a sad.  Sign up today, and you too can be glamorous like me.  (Diary oufit: my boyfriend's sweatpants. Diary hairdo: somewhere between Cyndi Lauper and Punk Brewster.  Diary beverage: caffeinated.  Need I say more?)

Fabulousness continues below the fold.

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GUS (Gave Up Smoking) is a community support diary for Kossacks in the midst of quitting smoking. Any supportive comments, suggestions or positive distractions are appreciated. If you are quitting or thinking of quitting, please -- join us!
You can also click the GUS tag to view all diary posts, or access the  GUS library  at dKosopedia for a great list of stop-smoking links. Check it out!

I don’t remember my first puff.  I don’t even remember my first whole cigarette.  The cigarette I talk about as my first was the first cigarette I needed.

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