Chronically Awesome: Become a Member by Brian Ross Adams

Chronically Awesome: Become a Member by Brian Ross Adams:

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I was not only surprised, but very grateful to Brian for writing this post. Often, when one is working on a labor of love, plugging away night and day, it feels as though we work in a vacuum. Not only do we not notice if anyone else is seeing our hard work, it is really the last thing we think about.

To read these words, to see that I am being noticed, that someone does care about what I do and it's impact not just on a community, but on me personally, meant (means) a lot.

Brian wrote this letter as a direct response to things that he learned from our friend and mentor Jim. I think he also wrote it to tell me "I am watching you, I see what you do, slow down you are killing yourself." How can doing what I love so much be killing me? Well, I suppose you'd have to read his post to get just a small inkling of what I am talking about. So, click the link up there and you will see what I am referring to.
Thanks
Jules

Duration of Immunity Study for Rabies Vaccine - Rabies Challenge Fund

Duration of Immunity Study for Rabies Vaccine - Rabies Challenge Fund:

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Truman Capote Shapiro (Front) and
Denny Crane Shapiro (Back) ask for your
Attention!

Do you live in California and love Dogs? It's time to take a stand against AB 272 which has just left it's Assembly committee with a unanimous yes vote.

Now stick with me here, this is important:
At the end of this really long post, if you really want to skip the facts, the figures, the interesting stuff about how the government even f*#ks this simple thing up, I have a call to action for you if you live in California, and one if you do not.

AB 272 was written by someone with a combination of inaccurate information and just plain wrong information. Even after the information was corrected three times, the California Assembly Committee that was assigned to study this bill could not find how the bills outcome met with the initial goal of the bills sponsor: The Health Officers Association of California.

Basically, the bill changes the required rabies vaccination age from 4 months to 3 months. Someone thought this was a great idea because the packaging said that 3 months was the very earliest one should consider giving the vaccine to a puppy or kitten.

Here is why it's a bad idea. Here is what is going on for a puppy between 3-4 months:
1. The full boat of other vaccinations are happening, these are very stressful on a pup, as I am sure you have seen.
2. Weening from Mom. I don't think I need to tell you about that.
3. Puppy still carries that last bit of the maternal antibodies that come from birth and nursing. That natural immune system that is mom's "birthday gift" to puppy.
4. Puppy is getting a new home, that involves getting used to new food, new family (kids yikes!), new germs, new EVERYTHING!

If you give that baby a rabies vaccination at 3 months along with all of the other vaccinations there is evidence that you have just blown the gasket on the Mommy super immune protection and negated that rabies vaccine altogether, thus leaving the puppy unprotected until new owner gets the first booster which could be... don't hold your breath. We all know that everyone goes into buying a dog with the best intentions but the follow-through on rabies vacine boosters are not great.

Let's' go to the label shall we?

"Merial’s IMRAB rabies vaccine labels indicate that they "can be administered to puppies as early as 3 months of age" and Pfizer’s Defensor rabies vaccine labels advise that they are for dogs and cats “3 months of age or older.” These instructions denote the minimum age at which it is safe to administer rabies vaccines (i.e., do not administer before 3 months of age) and not a minimum age at which they must be administered to be effective. Scientific data reflect that the later a puppy can be vaccinated, the more likely the vaccine will have the desired immunological response due to reduced interference of maternal antibodies, which are still present in 3 month old puppies."

And why do people wait or avoid that booster rabies shot?
Because we just don't see a lot of rabies in dogs in California. It's true that cats are more prone to rabies than dogs (sorry kitty owners, just a fact) but the author of the bill got all freakie deakie when he saw this hot spot of rabid bats and other rodents in California and he transposed the numbers when he saw other state statistics of how old dogs are when they get their vaccines (he saw all but 12 do and got confused about the statistic of the 12 state bodies that recommend immunizations and at what age) and totally went... well... rabid on the whole dealio.

Well guess what? I'll tell you.

"The past two years we have seen a 4 -5 fold increase in bat rabies in LA County, with some areas being hot spots.” There has been no escalation in canine rabies corresponding to the increase in bat rabies, which according to the Department of Health’s Reported Animal Rabies, for Los Angeles County there were no cases of rabid dogs from 2010 through 2012, while there were 114 rabid bats (22 in 2010, 38 in 2011, and 54 in 2011—representing an increase of nearly 2.5 times instead of a 4-5 fold increase). Statewide, there have only been three cases of rabies in dogs since 2007, as opposed to 981 rabid bats and 147 rabid skunks for the same period, which evidences the fact that the current law requiring puppies to be vaccinated against rabies by 4 months of age is effective at controlling rabies in California’s canine community and does not need to be changed.
To address the concern over a rising increase in rabies in the bat population spilling over into the domestic pet population, Dr. Ehnert and other members of the Health Officers Association of California should request introduction of a bill requiring that all cats in California be vaccinated against rabies, as cats are reported to be 4 times as likely to be infected with rabies as dogs.The Chair of the Compendium of Animal Rabies Prevention and Control Committee, Dr. Catherine M. Brown, stated that “[b]ecause more rabies cases are reported annually involving cats…than dogs, vaccination of cats should be required.”

As my dogs like to say: Blame the cats blame the cats.
But seriously, something that was meant to protect cats spilled over into the dog world, unnecessarily.

Call to action!

California Residents: Write to your State Senator and Assembly Member. AB272 has cleared committee. It has to go to Assembly and if it passes there it will go to the Senate. At minimum write to your Assembly Member. Don't know who your representative in Sacramento is? Check here: http://bit.ly/154U8uA

Non-Resident: Donate to the Rabies Challenge Fund http://www.rabieschallengefund.org/ Not only are they fighting for this, but fighting to change the booster time period from 5-7 years. This keeps our pets safe from over immunization. Read the site, if you like what they have to say, throw a couple of bucks their way.

Low Feelings Can Feel Redeemed When Expressed

Low Feelings Can Feel Redeemed When Expressed:

A video blog by WhatTheJules Bipolar Blogger, Cole. It's an interesting watch, I suggest it.

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My Little Comforts

My Little Comforts:

Martin Luther said, "Be thou comforted, little dog. Thou too, in Resurrection shall have a golden tail."

When my eyes open to the slowly increasing vibrating alarm of the Up Band on my wrist each morning, I wake slowly. I push the button on the band and reluctantly stretch out my toes, and then my legs. My legs always meet resistance rather quickly. Warm resistance. The resistance behind my knees makes a small groaning sound. I smile. "Good morning Denny." Now my feet make contact with the larger, immovable, unwakeable mass of eternal puppy, Truman. Truman is always asleep on his back, legs akimbo.

I get out of bed, more concerned about disrupting their sleep and comfort than the possibility I could injure myself climbing over and around them. I just need to get my meds, then I can get back into bed for a couple more hours. When I return, Denny is in the same place, but Truman has moved to my pillow. After I slide him out of the way, it's back in bed, back to sleep.

Just a couple of hours later, I hear things in the apartment moving around. Brian is up and starting his day, the boys and I are deciding if we want to get up. They wait for me, we get up together. Some days Denny stays in bed a little longer, the old snoring man, no rush.

I am always accused of anthropomorphizing my pets. I give them very "human" names: Denny Crane and Truman Capote are my current, amazing Shih Tzu fur babies (for the uninitiated). I talk to them about everything from what I am doing at the moment, to what I am planning to do for the day. When things are bothering me or things are making me laugh or happy, I tell them about it. I don't talk to them in a voice that is silly or babyish, I talk to them like they are people. And, you may not believe me, but they listen. Read More...

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Oh My Aches and Pains!: Call for PFAM Submissions: The Stresses of Chronic Illness

Oh My Aches and Pains!: Call for PFAM Submissions: The Stresses of Chronic Illness:

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This is a great Blog Carnival for the Chronically Awesome. I will be taking part in this project, and I encourage the Chronically Awesome Community to do the same.

From the Oh My Aches and Pains! Call for submissions post:

It's a fact that modern life can be stressful.  Just ask anyone, healthy or sick.  Stress is so prevalent that the entire month of April is designated Stress Awareness Month. 
And there is no doubt that chronic illness is one HUGE source of stress.  Or that living with chronic illness brings with it a whole set of new stressors.  I recently wrote about those stressors in another post and they include:

• reduced physical and/or mental capabilities 

• fluctuating health status

• financial challenges

• the repercussions on your relationships

• the impact on your self-image and self-worth

• the physical, mental and emotional burdens of being sick

For all these reasons and more, I've decided to make The Stresses of Chronic Illness the topic for the April edition of the Patients for a Moment (PFAM) blog carnival.
I'm looking to curate a collection of essays about how difficult life with chronic illness can be.  So write about the all the big or little things that cause you stress and make life with chronic illness challenging.  Those things can include your take on dysfunction in the health care system, health care policies that don't work and misconceptions about people living with chronic health problems. 
You have my permission to vent as long as you also include some suggestions, tips and advice on how you cope with the stressor(s) you discuss in your post.

For more information on submitting, click the link at the top of this post. Happy Blogging!
Jules

Glorifying Bipolar Mania

After two long weeks of writing, re-writing, editing, and considering the upshot of such a post, I finally produced this piece. I don't really know what I was so worried about. I have never been afraid of anything I have published before, but perhaps it's because I have never really put a piece out there that could so directly offend a group of my fellow Chronically Awesome patients before. I do believe that anything worth feeling this strongly about is a feeling worth writing about. It's been awhile since I really wrote about something in this way. So, I give you:

Glorifying Bipolar Mania:  "I cannot imagine a world where it is "ok" to sing the praises of the symptoms of an often dangerous psychiatric disorder. I cannot imagine a life where one manipulates medications or triggers to bring on possibly life threatening manias for the illusion of productivity or creativity." visit WhatTheJules to read this entire post.

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Sarah's Life - Living With (And Beyond) Fibro: 10 Ways To Help Out Your Chronically Ill Friend

Sarah's Life - Living With (And Beyond) Fibro: 10 Ways To Help Out Your Chronically Ill Friend

Check out this great post by Sarah. There are some good tips here.

Yesterday and Tomorrow: Looking Back, Looking Forward, Looking Awesome

Yesterday and Tomorrow: Looking Back, Looking Forward, Looking Awesome: I do believe that what could be looked at as a bad year could also be looked at as a transition year. A year of change, a year of movement. Perpetual motion is not always a downward spiral. Motion can be spinning ones wheels, or moving forward. I have spent much time spinning my wheels, getting nowhere. Just creating rubber meets road, ugly skids that went in very tiny directions left, then right, then left again. Now I have gone a direction. It is my choice now to make this direction a positive one.

Click the link to go to my site and read the rest of my New Year's Blog Post

What Being Chronically Awesome Means to Me

What Being Chronically Awesome Means to Me: What does being Chronically Awesome mean to me? It means making choices that make me awesome, that make me happy in spite of what could be thrown in my path to make me stumble. Being Chronically Awesome is growing, and making changes to keep me first, and illness second. I will be awesome. Today I am Chronically Awesome. Why? Because I am. Hard Stop!

Read the rest at my website, and read more blogs on the same topic at www.facebook.com/chronicallyawesomebloggers.
Today, the Chronically Awesome Foundation is sponsoring a blogging project called "What Does Being Chronically Awesome Mean To Me"

Just write your blog on the topic and post the link to the Facebook page. We will publish it to our timeline and all of our Twitter accounts.
It's a great community project just waiting for your participation.

A Thousand Tiny Deaths

New at whatthejules.com

A Thousand Tiny Deaths: Depression I can only say that each breath I take is like dying, so each day is like dying a thousand tiny deaths. My chest hurts with all of the anxiety. Did you know that it is possible to wake up crying? To wake with tears pouring down your face? This depression I am in, it is, by far the worst I have been in in about 5 years, or perhaps ever. That remains to be seen depending on how long this lasts. Cont... A Thousand Tiny Deaths

Gallows Humor

A few weeks ago, I was sitting in the stupid paper gown at the urgent care. I had an oozing skin ulcer on my shoulder that had sprung out of nowhere during a flare, it became infected because I was just too damned sick to do anything about it. Now, at the insistence of someone who seemed to care more about me than I cared about myself, I was finally getting it looked at.

In comes the doctor. After looking at my paperwork, she looks up at me and says, “You have all of this wrong with you?”

“Yah,” I reply. “Amazing I am even sitting up straight isn’t it?”

“According to this,” she says, “You have at least seven chronic conditions. Just so you know, seven is the limit, you aren’t allowed to have anymore.”

Laughing, I reply, “Great, can you tell my body that, I am pretty sick of this shit.”

How nice to find a doctor that was able to ease my fear of the pain and total disgust with myself and my current situation by starting off with a totally irreverent and very appropriate joke. How could she possibly know that I was a huge fan of gallows humor? That dark look at the misfortune of the current situation, and turning it in to a big fat laugh that cuts through the tension like the first and only useful slice of that ginsu knife you bought at the county fair.

I always try to be that patient that the nurses in the ER are happy to help out. I make them laugh and I commiserate with their late night misery. I joke with them and I laugh about the utter hell of the ER, including how I have contributed to the mess by showing up with my agony, and my difficult to pinpoint diagnosis. I joke about the vagary of my symptoms, and create an air of fun within the curtained walls of my little corner of institutional McMedicine. That is, until I just can’t stand my own personal misery anymore.


The problem with this tactic is, it tends to minimize the pain you are in. Initially it gets you all the attention you want and deserve, but it does lead to making you look less sick. It is a careful balance. And when you have chronic pain, you also have to be careful to not immediately ask for pain meds, so as to not appear to be yet another drug seeker. Our medical system is rife with the drug seekers, thus the rules of the system are built around these asshats, and not around those of us that are really in need of care.



Of course when you arrive by ambulance due to an SVT (Supraventricular tachycardia), there is no question you are sick. My heart had hit a good 250 beats per minute before I hit the floor and then hit the gurney. Because recovery from an SVT can be quick, imagine my husband’s surprise when he met the ambulance at the hospital, and when the doors opened, all he could hear was roaring laughter. However, the laughter soon ended when the subsequent exhaustion from the episode took over. Still, I had already had time to charm the staff, and make it known that I was a “good patient” and would not be a problem.

What was I joking about in the ambulance? Easy: how I had totally screwed up every one’s chance to watch the Super Bowl. How I was going to be the one responsible for the number of beers being missed, and that I had perhaps saved them from a lot of heartburn from all the crappy food they were not going to be able to eat. I told them all I would give them permission to use my address from my records to send me thank you notes for this inconvenience that would only later be realized as the best gift they could receive. I then went on and on about how I was offended that I was not getting lights and sirens. This was followed by my impersonation of every staff member of the ER that I could remember, sadly that was only about a dozen of them, as I had only been to that ER about 20 times.

My daughter was in the front seat of the ambulance, and she too has a hell of a sense of humor, and was requiring the driver to explain every button and switch to her until she got him to give me the lights and siren I so desired, even if it was just for a moment.

Humor really serves so many purposes in these grave times. Not only does it help everyone involved in the situation to forget, just for a moment that something pretty awful is going on, but the laughter releases endorphins that helps that pain, even for just a few minutes.

My family is famous (in our own collective mind) for laughing through every tragic happening in our history. I know to some we must seem like awful people. To laugh at the greatest misfortunes to befall those closest to us. But, for us, we are a family that has managed to create the greatest memories out of even the worst of times. We have made the greatest love out of oceans of tears, we have turned pain into roaring giggles.

I have carried that tradition into my chronic illness, into my worst of medical nightmares. I can tell you that there are few doctors or nurses that have not forgotten me, and that serves me well. And, when I woke from my most recent surgery in what seemed like the blink of an eye from falling asleep, not believing that it all could have happened so fast, and I said to my doctor, “no way could you have done that so fast, get your ass back in there and get this shit done right!” I can tell you that the doctor that I have never seen even crack a smile, laughed so hard he dropped his charts, his pen, and took his glasses off to wipe away his tears.

That right there is good stuff.

- Jules Shapiro, August 5, 2012 - Originally posted on WalkForCure.Org

An Ableist, AntiSemetic Troll Walks Into A Podcast...

An Ableist, AntiSemetic Troll Walks Into A Podcast...: Yesterday I was trolled. It was really quite awful if I must be honest. I don't want to admit it because when I do, the troll wins. I think what bothers me the most is that he revealed a chink in my Chronically Awesome Armor. He got to me to go from strong and mighty Jules to crying baby Juli that could not deal with it, could not ignore, could not overcome the stupidity... (you hooked me, let me read the rest)

So I have THAT going for me!

So I have THAT going for me!

This is my most recent post on www.whatthejules.com

Mostly it explores my recent diagnosis with EDS. This dx came, interestingly, just a week before the start of Ehlers-Danlos Awareness Month. Also, if you visit the site regularly you will notice new design.

Thanks for checking it out!

TalkShoe - Call - Chronic Chronicles: Awesome Talk & News

TalkShoe - Call - Chronic Chronicles: Awesome Talk & News

Take A Look Into My Baby Blues

In case you hadn't notice, I don't really use this site. I have my own site, and I didn't just want to shut this down totally. Now and again I remember to come over here and do something with it. I like it because it allows me to stay linked with, and follow other blogger.com sites.
Here is a preview of my most recent blog post. It will lead you to my site where you can see not only other posts by me, but by my whole WhatTheJules team.
Yeah that sounds kinda self important, I have a team. It's exactly the opposite of self important, really. I just know that I can't be all things to all people, but I want to offer more to the Chronically Awesome community. So, for now I have me, I have Donna Kay to write about Crohn's and I have Gini who writes about Fibro and Chronic Fatigue. We also have a discussion board and a podcast.
So, check our shit out. :)
Thanks


Take a Look Into My Baby Blues
This isn't my usual blog style, and I hope you forgive the departure. For once, I would actually like to use this darn thing as a "journal" like some other bloggers do. You see, I have a problem. Ok I have many, laugh it up. I have this giant heart, but a big void empty place situated someplace lower. My attempts to fill the void are always so temporary, it's like a drug. You feel great doing it, then later you are only reminded of the things you don't have, the loss you are trying to make up for.

I go through this every couple of years, I get this pang, this sadness and urgency. This need for babies. As I have gotten older, it's gotten better, but it has not gone away. When I got sick, it got easier to think about the fact that I could never have another baby. I mean really, why would someone my age and with my physical limitations want to chase a kid around? Then I had the ablation, now conceiving is impossible. So you would think that with carrying a child being as risky as it gets, not wanting to be a full time mom, and knowing I can't conceive that I would move on right? HA! You don't know me very well then do you?

When I was growing up, I would watch shows like "The Brady Bunch", and "Eight is Enough". These television shows, if you are not familiar, are about giant families. Through the blending of families, I have five sisters and a brother. I never gave thought about how many kids I would have when I was a kid. I just figured I would have a few.

My first pregnancy happened six months after I was married. I was 22 years old, and I was beside myself with excitement. 

I read all of the books. I watched videos. I signed up for the birthing classes, found the very best doctor I could find. My next door neighbor was an OB/GYN nurse. She became my best friend. (Poor thing)

Sadly, in spite of all the textbooks, my pregnancy was not textbook. Things went wrong and things were miserable. I have some great memories of my pregnancy however. I remember seeing an entire foot pressed against my belly. I remember seeing that little creature in the ultrasound that looked like a tiny fish. We started calling her "The Salmon". Of course, we did not know she was a she at that time.

I was the most enormous pregnant woman I had ever known. I gained 175 lbs. (I know right?) The child inside of me seemed to always be moving. I read to the baby, talked to the baby. I played music through my Walkman (remember those?), and I was a full time student. If there was such thing as in womb learning, this kid was getting it. And, I was taking notes. I was writing things down about how the life inside of me responded to different things that I did. I wanted to remember it for next time.

Next time.

I didn't know there wasn't going to be a next time.
Read more...

My Community, My Friends, We are Chronically Awesome

New What The Jules blog post: My Community, My Friends, We are Chronically Awesome