My last photo project at the Met

A long long time ago in a land far away I use to be a professional photographer. I loved it so much that even when I wasn’t in a shoot I would assign myself projects. This was from on of my last travel photo shoots where I had a one day shoot in New York and stayed 3 days. Almost all of it was in the @metmuseum doing a series of people interacting with art. Someday I will put them all in a book. If you had no limitations what project would you do?

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Bored and Obsessing on Shakespeare quotes

I did really have plans today. I even did my PT and an interview this morning. I had the WILD idea I could sit outside watch my chickens and write. Then the snapping sound and the sickening sensation of my entire leg missing. In short my day went to pain killers, bed, and Pinterest.  

I get fussy on Pinterest. I can only be inspired so long before I want to make my own things. Since anything with hands (drawing, knitting, or sewing) is out , dislocated wrist. Working on the computer, other room too far from bed. Writing, pain has made me lazy and foggy. I am down to just my IPad which fortunately has WordSwag and my old photo shoots on it. 

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Illustration As Distraction and Chronic Pain Therapy: A Chronic Illness Blog

I have been really stuck, lost even. It is like waking up from surgery. Wrestling the ether. Struggling up for air, motivation, art, my family. I have been in and out of panic attacks. Or maybe they are POTS attacks. Perhaps MCA. Google suggested heart attack or the beginning of one. Did great things for my anxiety, POTS, or MCA. In short google does not help. EVER. When it comes to am I dying or is it my chronic illness Google will kindly and blithely inform you that yes, you are indeed dying.

I digress. It has been a high pain week. Bones I thought stable laugh at my hubris. They have become adventurous ready for new vistas. It is too dark in my rib cage, too dull near the knee cap. It is so very much better on the other side. Ehlers Danlos is always a surprise.

I know I need to draw because I start biting my nails and looking for candy like a fiend. No really, there are seven year olds at birthday parties with more self control than I have when in pain. As a last ditch effort I pick up my pencil and ipad and draw util I forget my body. I make loose lines if I am free handing or start with forms if working from Pinterest and I obsess as something comes out of the shadows. I might have intentions of what I am drawing but the illustrations have their own ideas and they never bore if I get out of their way.

Chronic pain needs pain meds. I will scream that from soap boxes. But even when properly medicated my pills do not cover all of the pain. At best they can get me to a five. Creating, drawing, and writing can trick my brain into leaving off the constant screaming.

What is your chronic pain distraction? Comment Below

I Have Been Left Alone Too Long and Need to Be Resocialized. The Pug Asks Someone to Help

It is Saturday morning. My daughter have gone in her room to clean it 4 hours ago. No it is not clean. I can only imagine but no I don’t want to. I am curled up on the couch in a perfect example of adulting. By adulting I mean my favorite Spotify playlist, my favorite Tardis fuzzy pjs. (If you do not know what a TARDIS is please go immediately to Amazon Prime and Dr Who I will see you again in approxamitly 3 months. Three month you say? Like I would know. Why yes you uncultured pain I have gone through all of the nmodern Dr. Who’s more times then I can count so yes three months). I am on hour 3 of Pinterest mostly Dr. Who memes when the pug has decided my morning of peace and sci if can not be unless she is a part of things. This means every pin I am pinning she is licking my hand. So I am on the couch covered in Captain Crunch have given in to the pug and have been singing her ballads until she gave me the same look my teenagers give me and is now lying across the room by the fire judging me. This my friends is the true face of chronic illness😂 

First day back to routine out of bed

At no point in my life or when I was a child did I say I want to grow up to be a Gothic Victorian novel. I want to be the woman in the Attic the woman in the yellow wall-paper room I never said I wanted to be l removed from society.

But but here I am 4 weeks at a time in a back room waiting to see if my drinks will realign or if I will need to go to the hospital. That has been my last few weeks hardly able to get out of bed even to brush hair or teeth or do the basics. 

HavenHaven had a scary brush with losing blood flow to my foot to where it turns a beautiful shade of Smurf dusky blue. I was too worried to go to the hospital because I didn't think we could afford the bill. I was super lucky I was able to re-establish blood flow on my own but still it would have rather had a professional take a look at it. 

Today today I actually got the morning by myself for the first time in a long time I was able to listen to my favorite music sit in my wheelchair in front of my getting ready station and have my drag queen moment of putting on my makeup in front of my lighted mirror. 

My First Lessons in Neil Gaiman’s MasterClass on Storytelling Thank you for the Therapy Mr. Gaiman

I’m taking Neil Gaiman’s MasterClass. I never got to finish my MA. In literature so I am doing this (You know at a saving of 20K). In lesson two he asks all of us to write down the things we don’t want anyone to know about ourselves. The embarrassing.  

You know when the universe throws pebbles at you then rocks, etc? 

Then. This week’s Magician’s episode and Elliott (sigh swoon sigh again) has to go back into his most uncomfortable humiliating memories to find a door. 

Either my entertainment is getting surreal, the Matrix is feeling especially lazy, or I have some work to do. Since I live in the US and can’t afford therapy hello there my friendly therapists!  

Yeah if you are new here I am a loud flawed individual who mercilessly uses this blog and the podcast as my own personal therapy. See look how good I am at admitting the bad sides of myself! 

I have a long history of putting artists on pedestals who unflinchingly bare their stories and scars. From the trauma of Tori Amos Me and a Gun (The anthem of every high school rape victim in the 1990’s Should I have put a trigger warning for this?) To Ani DiFranco’s abortion spoken word Tiptoe and THE BEST break up song hands down EVER Both Hands. Seriously if you have never heard it before please listen listen again then go look up the lyrics. I mean your flesh has been my pillow your bones have been my bed frame and I’m waiting for sleep to offer up the deep with both hands????? After my girlfriend left me back in the stone age this was on repeat. 

Now if you want a fun one for laughs and I do mean hold your side wondering if kidney transplants might be needed go to Let’s Pretend This Never Happened Jenny Lawson. If you want full admission into mental health in ways comedians wish they could make you laugh here it is. 

So I’m working on it. Some of you know I am also an author and illustrator but nothing I do will be true unless I look at what makes me uncomfortable. What I do not want to see about myself. Perfection is super boring but that flash of you too? I mean I might never get a chance to talk with you but you too? I’m not alone?  

There are moments of real and true in so many pieces of art and fiction and they stand out because they ring so honest and real they stand out. It is perfect because they could be nothing else.  In the Legion of Honor there was the most gorgeous painting of The Pieta. Now this  has been painted a billion times. This painting was so desperately arresting that I with my ZERO attention span stopped and stared. This was not a religious painting. This was a mother who lost everything. She was recomposing her life for after. After what she had placed in the center left. There were no cherubs no angels. There were zero platitudes. It was raw grief and her eyes meet yours daring you not to feel it to. Not over a god but over her son.

Not religious. I am at best a swirling changing chaotic pot of spiritual but that painting was not about religion. That was truth of loosing what you lean on. It was true and painfully vulnerable

Do you have any music, books, paintings that you love for their pink shivering underbelly vulnerability? Comment Below

An Apology and Some #Inspiring Shade

 

I have a HUGE discord between who I am and who I think I should be. This gets made starkly clear when one of my closest friends is the person I see myself in my head being. She is an f*cking rockstar.  

This all came to a head today. Her birthday and a VW overnight camping trip. Wheelchair campgrounds she was super kind and thoughtful. 

Here is wher my optimism gets me and others in trouble. We talked about this 5 months ago. I did give the standard I might cancel Wen you drive up to my house speech but in my head I was already becoming the california adventure girl. You know the one who perfects bedhead and ocean waves albeit from a wheelchair but how many #inspiring disabled bloggers do the same? 

I had been passive aggressively trying to cancel without clearly saying I AM DYING AND EVERYTHING HURTS AND IF I COME WE WILL BE SPENDING THE ENTIRE TIME IN A RUSTIC COASTAL ER. I really have to work at telling people exactly what I need. It is a MASSIVE work in progress but  

1. I HATE disappointing anyone. Trust me my family knows this

2. I was not ready to give up the #inspiring california instagram perfect weekend of campfires and roasting s’mores from my wheelchair. 

So if my body had any doubts that fun might be on the horizon it went into full meltdown. I am talking bones sticking out. Loss of blood to limbs giving them that oh so lovely smurf as dusk color. 

So cancelling 6 hours in advance with clarity. I hate being a “bad” friend. I know I am a disabled friend with multiple chronic health issues. That does not make me bad. What makes me bad was I was not clear with my friend. I was to star struck with a weekend of who I use to be.  

I need to come to terms with my limitations. That is clear. I miss the person I was and the one I want to be. The view from my bed is not near hashtag worthy or inspiring of fun..though the pug and the wolf are awfully cute. 

Did you know Jameela Jamil Has Ehlers Danlos?

Did you know Jameela Jamil Has Ehlers Danlos?


Why yes. Yes I do. Trust me if a celebrity has what I have someone has called or texted it to me within an hour of the Mighty releasing the info.

So some thoughts when a celebrity who already does: life, glamour, humor, and messaging so much better than you now does your disorder better than you…

Petty? Sure. Absolutely. Have you listened to the podcast? Read the blog? Petty and snarky is kind of my jam.

Last year Lady Gaga came busting out of the chronic illness closet with platform crystal encrusted armadillo McQueen boots. Did you know Lady Gaga has Fibromyalgia?

See that is the question. That is how it is phrased but what my little opioid crisis fevered hamster on endless cycles hears is: Did you know there is this super famous person who not only manages to slay her career but stays a size 0 still dances and sings and has YOUR SAME disorder but does it in heels??? I told you I’m petty. You were warned.

Now Jameela is on Instagram stretching her cheek skin like a caramel goddess chipmunk and twisting her exquisite limbs into yogi sighing proportions all over instagram. All I can hear is look she is twisting her arm like you and she’s not screaming. You scream, and by the way she can carry off bangs.

Do these women have the right to scream their message from swarski microphones from perfect lipstick mouths? Yes, of course. It would be nice if they mentioned there are stages to disorders. That some people are more or less effected. When an invisible illness finally gets a spokesperson I would rather they not blithely dislocate with a smile. A nod to those not rocking the disorder would be nice.

In all seriousness they have to know that Ehlers Danlos is the first thing doctors google when you tell them. If now their visual is oh you dislocate but it doesn’t hurt. Or you have stretchy skin it is going to make my ER and disability visits suck. I get it they work they need to show they can work. Or hey, maybe they are affected differently.

I will say I have both. I use a wheelchair. When my elbow dislocates I scream from a mouth that might have seen lipstick in the last month. When my skin stretches it also tears (must not have had the new oxygen facial). My tibias often come out past my knees and I can spend weeks in bed watching a clock to see when 20 minutes have gone by for my meds to take a slight edge off what I will blithely call seventh level of hell pain.

I would be shocked if Jameela read this (If you are reading this I ADORE you for all of the body positivity work you have done) PLEASE PLEASE when you talk about Ehlers Danlos talk about the differences. Just because you are capable of work and leaving the house remember there are some of us struggling to leave our beds or brush our hair without dislocations. You were great at showing the other side of diet teas maybe lift the veil on the not so fashionable side of chronic illness. Or hey, come on the show.


Chemo Gift Baskets DIY: How to Help When Someone You Know Needs Ongoing Treatment

Kind thoughts are lovely but you know what is better? Kind thoughtful acrtion. It is not easyt to know what to do or what will help when someone you care about needs ongoing treatment for infusions. This is a list compiled from friend who have had to undergo infusion therapy.

Please add to the list in comments below!

  1. Lyft and AirBnB Gift cards

  2. Weighted blanket

  3. Stainless Steel Water/ Tea Thermos

  4. Slippers

  5. Eye mask

  6. Audible Gift Card

  7. Ginger Chews

  8. A lovely easy to carry backpack (with device charger) to carry everything with them

Help me name my High Tech “Wheelchair” The End of Wheelchair Shopping for The Ehlers Danlos Spoonie

Right off the bat I want to be very clear this post and I am NOT sponsored by Whill. This is my own Ehlers Danlos Spoonie opinion and as you can expect it is a big opinion. 

So far I LOVE IT! 

Even with upper and lower body dislocations I was able to feed my pets and get coffee. My cleaning style can best be described as “There was a struggle here.” Yes, I stole that from Pinterest. Even with my clothes and dog toys in its’ way the Whill Ci cleared them all with no trouble or spilling my coffee. 

Some things to look forward to on the blog and YouTube channel will be shopping for the best car for a wheelchair user. Yes, if I must car shop I will make something out of it. 

Travel with a power chair. We are thinking of taking the Whill with us to Paris! 

Any other ideas?  

 

So I need your help as I start venturing out in the world (if you are my neighbors a BIG help would be not parking on the sidewalks=0).  

Help me think of a name for my new wheelchair. My friend has already taken Falcor which is the most awesome name ever for a mobility aide ( jen you know you are awesome). 


New name for my magic machine that can clear dog toys in a single roll,  

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The Last 24 Hours A Tale of Harrowing Adventure, Terrifying Dislocations, Bravely Fighting Bureaucracy , and Whill Wheelchair Joy: A Ehlers Danlos Day

1. The last 3 days I have left my bed for the bathroom and for Korey my rock star of a physical therapist who tries to train my bones to a more medical textbook look than the art history Picasso thing they usually go for.

Did Google search for Picasso body was NOT disappointed so very Ehlers Danlos

Did Google search for Picasso body was NOT disappointed so very Ehlers Danlos

2. There is crying. Crying in public. Crying at my pain clinic. I do not do this. There’s no crying in Ehlers Danlos (If you do not get the League of Their Own Reference please dear child go and rent from Amazon. I promise all of your Geena Davis dreams will come true. )

3. Back to crying. Both tibias are dislocated along with a rib and wrist. Do you know what that means? No cane, no wheelchair. So I’m shuffling myself into my pain clinic like Frankenstein. Why would I not cancel this appointment take myself to bed and take a pain killer like a reasonable human? Oh my summer child...

4. Thanks to California’s new 2019 opioid laws I was given 5 days of my January prescriptions. Isn’t it the end of January you ask. Why yes, yes it is oh gentle kind child. I CANNOT miss this appointment because I need the new magic forms that allow the pharmacists who believe their degrees now have taken them from dispensing said medication into the realms of pain doctors with a say in my medication.






5. OOOOOOO more fun with laws. I now have to buy a I won’t die from an opioid overdose medication called Naloxone. Good idea? Sure, I mean I haven’t changed my meds for almost 10 years but sure it would be nice just in case. It’s $100. My insurance does not cover it which means Medicare does not cover it. Wow thanks!

6. In bed for the entire flipping night. Dogs have become immensely happy at their good fortune and snuggle. Cats have been jumping from higher and higher places in my room dive bombing the dislocated joints and smirking with evil glee.

7. REDEMPTION!!!!!!!!! My whill wheelchair is coming today. Yes. officially they cannot call it a wheelchair but my I get to. MY WHILL WHEELCHAIR IS COMING!!!!! The incredibly kind man who is bringing it will be greeted with household glee and joy that could only be rivaled by and over sugared 5 year old at a birthday party with real unicorns and an unadulterated supervised candy counter. 








Soooooooooo how was your day? Comment below.

Best Books To Read On Bedrest 2019 A Chronic Illness Blog

Nope, not pregnant but even if you are I think you will enjoy this list. I have fallen down a VERY deep YA fantasy rabbit hole in the last few months. Thank to Ehlers Danlos and multiple dislocations I have had PLENTLY of time to read:

See your favorite bedtime reading here? Have one I missed? Comment below

I finished The Lie Tree By Frances Hardinge on a library loan. Sidebar, if you are sick and have a library card PLEASE download the Libby App then finish reading this list. After finishing I went to Amazon to order it for my niece. Then I understood what kind of writer I want to be.

The Lie Tree
By Frances Hardinge

Do you ever wish you did LSD but have a drug history that ends with I smoked cigarettes to avoid eating when I was a dancer? Just me? OK fine. This book take you on a head trip. The most unreliable narrator in a book that asks what would happen if the Little Mermaid was a messed up as the man who wrote her and ended up in an NCIS episode? Possibly not for kids. I mean I gave it to my niece but I don’t have to pay her therapy bills.


The Seas
By Samantha Hunt

Oceans at the End of the Lane. I had been patting myself on the back for not buying a MasterClass pass. I was going to do everything for free on YouTube. DAMN them and getting Neil Gaiman to teach! You cannot go wrong with Neil Gaiman books. It is just not possible but if you want to fall in love with dialog , rethink what might be possible, and rediscover the childhood awe and wonder that might have worn a bit thin over the years PICK THIS BOOK UP.

What 2 Neil Gaiman books? Yes, my blog, my obsessions, my rules. If you have not heard yet Mr. Pratchett and Mr. Gaiman’s comedy gold book Good Omens is coming to streaming device near you. Now if you have heard about this and you are not rushing to the comments section screaming DID YOU KNOW DAVID TENNANT IS…. we need to talk about Dr. Who. If you did do this hello my long lost friend. Now let the quoting wars begin!

Deciding on a new wheelchair Whill: Is it worth it? Am I worth it? Other Ehlers Danlos Questions

I have been using a Quickie wheelchair with a SmartDrive for my Ehlers Danlos and POTS. With rib and shoulder dislocation I started looking for a higher tech option and came across the only wheelchair with tech called the Whill. To spend 4k or deal with what does not work? That is the spoonie question.

I miss who I used to be: Ehlers Danlos Temper tantrum

I’m going to brag. It feels ok being in past tense but I was good. Really good. I am looking through my travel photos and I’ll put a link so you can see. I was showing my daughter pictures I had taken in Paris, Florence, Venice, and New York. Just looking at them makes me feel so proud that I did them and so mad at my body that I had to stop. I would stamp my foot but let’s be honest it would only mean another trip to the doctor.

i miss who I use to be. I miss making up projects and traveling or grabbing a model and making day dreams that lived in my head come to where others could see.  

 

Know a a sick person who would like to see this? Please comment and share. How do you get through the dark I miss the old me days?

Travel

ARt

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