Thursday, November 22, 2012

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


Wednesday, August 8, 2012

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

Sunday, May 27, 2012

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)

Wednesday, May 9, 2012

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!

Thursday, March 15, 2012

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...