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. 

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.

Confessions from a Spoonie Podcast Host, Lessons from Pugs, and Therapeutic Properties of The Great British Bake Off

Confession time. I just openly cried after watching The Great British Bake Off. Before you judge

1. It was the finally. 2. It is the day before elections so I’m already an emotional wreck. It had been decades since my last cigarette and I want one so bad! I am thinking we might be able to heal any cultural divide with Paul Hollywood and gluten. 

I am always wondering where the line is. My disorder is odd in that there is no way to anticipate what my body will do. I can dislocate at any moment. I can become desperately allergic to anything at any level at any moment. So today I found the line. I went out with Kyros to go to the Alameda Flea Market. It was wonderful and amazing. I thought I would be just fine since I was in the wheelchair all day and anyone who wanted a walker used pushing me as an excuse. A wonderful day and I can barely stand today. 

I had an interview which I remembered 3 minutes before (sorry Rebecca you are wonderful). This bugged me since I had really been looking forward to this for weeks. It was still wonderful but I would have loved to have at least brushed my hair before going on air. It ended up being a wonderful interview mostly thanks to Rebecca being amazing and so much wonderful information on Australia’s healthcare system vs. US system for people with chronic illness. If you think you understand this issue and you have only every lived in the US PLEASE TUNE IN ON DEC 3!  I have been doing this podcast for a year and I still did not completely understand. This is a super shareable episode about mental health and chronic illness, crohns, and the best way to care for the spoonie in your life.

I barely got home and in bed and had to pass off the shopping to my husband to deal with when he gets home from work. My daughter has stepped up like you wouldn’t believe on her home school knowing that I was really stressed about her grades she is VERY focused sadly because she is helping me out. 

Today I am trying to take Rebecca’s advice, that my parental guilt is not productive and guilty feelings should be reserved for actions that are done for the wrong reason. I have so much to learn from that brilliant woman. 

I am also taking advice from my lovely pug who is snorting in joy that all I can manage is to laze in bed all day petting her and watching marathons of The Great British BakeOff since I am sure I will TOTALLY have the energy to knead bread. 

What happened? I overdid the Death drop On Drag Race.

What happened?

I overdid the

Death drop

On Drag Race.

‘Tis the season. Yes it’s the holidays but RuPaul’s Drag Race All Stars is back! Instead of spending the next three weeks explaining why you are in a wheelchair, have a cane, using walking sticks like a praying mantis or like Naomi Smalls but this T Shirt. So much more fun than explaining your disorder (Ehlers Danlos for me) and easier than making a witty retort on the fly. I wish I was as clever in person as I am typing.

A Day in the Life of Ehlers Danlos: A Chronic Illness Blog

My day began by taking my ADD meds, this is an important part of the story. I have learned I must be very careful with these. Not in being afraid of side effect which lets be honest if you are a spoonie most of our meds side effect is death, insanity, or dismemberment. OK made up the last one but would it really surprise you? No I must be careful because I need to choose what I focus on with care. These meds aren’t kidding and I am a bit pit bully by nature. 

What amazing thing did I choose to spend my well earned focus on? Solving for world peace? Working on the Beto for 2020 campaign (did you really think politics would be left out? Really?) Training my lap wolf into a perfect service dog? Nope. Not a one. I didn’t even work on my novel or character sheets. I spent 3 hours weighing the best social marketing scheduler. (It’s Buffer by the way).  

I managed to do physical therapy. Hook myself to HWave for 4 hours (read review here). Go for a super short walk (thanks POTS why yes 60-134 BPM is completely normal for a sleep deprived sloth level race for less than a block. Helped the stay at home school sprite on hours worth of homework, not only am I not smarter than a fifth grader we can now safely say sixth grade is out as well. I have been going a bit feral so Kyros was kind enough to stop over to gauges my social skills since I have only been out of my bed 4 days in the last two weeks and that REALLY bites.


Mostly because I had a good day. You know the ones. That weird feeling of wellbeing. A bit of strength in the bones an odd amputation of pain. That small voice in the back of your head that wonders just how sick you really are. I even started daydreaming about travel without wheelchair. Maybe just maybe I could finish the Muldowney Method and go back to working 2 days a month, Gasp!

 

That was my morning. Then my wonderful amazing husband came home for part 2. We had a state of the union for our marriage the other day, we do this about once every few months. I told him that I felt like the family thinks I go into stasis when they are not needing me and I need some real time to be able to deep dive into daydreaming and writing. Wonderful man made sure I got it and took over the rest of homework duty and dinner tonight.  

I had the BEST time. I went down the YouTube rabbit hole. I watched Oliver Sacks talk about the nature of hallucinations and what happens when our optic nerves get bored and throw a fit. A TED talk from Anil Seth about consciousness my favorite line? We predict ourselves into being. BELIEVE that will be in a chapter of Lady Constantine’s School For Maudlin and Mischievous Young Ladies. I am also a bit of a magic geek and one of my favorite is James Randi who has made it a life’s mission to debunk mediums and faith healers. He gave a talk about one of the faith healers he had dealt with but it was the story of a man who worked for the faith healer that got me. I really think he is going to find his way into the book as a gardener. I just love the character arc of a kid who did the tent miracle shows and is looking for redemption. 

Husband remembered I had asked for some more together time that was real so we curled up and I read him a chapter of Jeanette Winterson’s book Christmas Days. Have to love a Christmas story that includes a roast turkey that could be brought back by a skilled vet.Now it is officially tomorrow and I am playing the medication game. Do I take more. How much more? I am not cool enough to die from an overdose. If I take the level I need will it interfere with what I took before. If I mess it up how long will I have to hear my mother say I told you so?  

A Very Bad No Good Terrible Day With Ehlers Danlos

I don’t often feel like this. I work hard at staying on the uptick but here’s the thing, for the last week I had only a few days out of bed. Today I found out my hand bone is sinking below my wrist and in physical therapy I managed to pop out four joints some that had just been relocated. I put on red lipstick today. When I put on red lipstick shit is getting real. My aesthetic leans more to wow you look great you brushed your hair. Is that a new sweatshirt you’re wearing? Are those the fancy Birkenstock’s. If I have redlipstick on I am trying. 

I am a bit heartbroken today. I have seen hand surgeons and rib surgeons. Each of them shrugs. I keep hoping there must be someone who can do something. It is a level of optimism even I feel silly with and I don’t often let myself think about possibilities. I use my energy to accept what has not been able to be changed.  

This last fl;are has leveled me. Spirit and body. I want a fucking chance at breathing without my rib flying. I want to go to see my daughter at her practice today. I want to energy to debate with my son. I am so very sad today. I am scared of hope but I really want it today. It seems as if the idea of decades like this is so VERY tiring. I want better. 

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Disappointing people & Chronic Illness A blatant call for ear scratches & tummy rubs

Disappointing people

& Chronic Illness

A blatant call for ear scratches

& tummy rubs

Pugs, Runaway Ribs, and the Ehlers Danlos Life

Nope, not ok rib you are out of order out of line fall back you are not special: and other ways I try to bully my bones into relocating themselves. The pug has nothing to do with this besides being ridiculously cute.

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Netflix Show For Mental Health Or To Watch During A Chronic Illness Flare

Netflix Show For Mental Health Or To Watch During A Chronic Illness Flare

In the middle of a fibro flare? POTS attack? General nope not leaving covers mental health spoonie I’m done day? This is my curated chronic illness what to watch Netflix list. After you subscribe to our newsletter comment with your own favorite go to Netflix movies and tweet out or Facebook share the post to find out what are your friends favorites.

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Fear depression and chronic illness my Ehlers Danlos Chronic Illness 30 day video challenge

Fear depression and chronic illness my Ehlers Danlos Chronic Illness (come join us on instagram ANYTIME I have lost track of which day=0)video challenge has gone off the rails and I have no idea what day this is. However, I have been doing a lot of talking about fear depression and chronic illness and chronic pain not just in the Ehlers Danlos community but with so many spoonies. The only thing I can say is that you matter do whatever you need to do to get through this and a personal recommendation as Doctor Who marathons and the good witch marathons if you need a little happy in your life take care be really patient with yourself and be kind gentle

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Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog

Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog

Don’t try this at home. Read about it so you don’t have to try it. See how long I can go without my pain meds. I’m not big on trigger warnings but it’s not pretty..figuratively and literally. I am MUCH prettier when I am not ready to loose my mind see also parenting mishaps.

Read More

A Rant For Technology A Disability Perspective : An invisible Illness Blog

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Let’s have some fun and watch Monica jump on a self-righteous soapbox. I just had a discussion with a group of moms about “the good old days.” The first way to make me go into scarlet levels of rage. Do you know who “the good old days” were good for? Not many and certainly not people who were disabled or suffering from my favorite word: hysteria. I’m going to glide over most of that in an uncharacteristic want to stay a bit on topic and just have a look at the very particular sliver of “the good old days” the other moms were talking about. A mail time when we all lived in a rosy golden light of communication, family dinners, and board games in front of the fireplace. 

Getting a little Norman Rockwell for you? Here are some things to think about before screaming how technology is the ruination of us all

1. Not communicating anymore? Are you kidding? That is most of what we are doing on technology. For anyone stuck at home thanks to chronic illness this can be the ONLY communication from and too our little worlds. For anyone with anxiety and depression at 2AM guess how you can find someone to talk to? Support groups, friends, and even therapists. 

2. But before all the big bad tech companies people use to actually go out. NOT ALL PEOPLE. Again my physical world can be small but with an eye to the future I might be able to “travel” again. Those who are too sick can get an education from technology. There are now jobs that can be done at home. For those who go out technology has made it easier and safer to find things and places.

OK Maybe not upgraded scary Dr. Who Cyberman way.....

3. Kids are going brain dead staring at machines. OK history lesson from the beginning of time the generation coming up is ruined! Worst generation ever! Classical music would destroy them. Waltzing would led to fever of the brain. Radio would keep entire families around a box! How would they work? The good old days would be gone forever. Then comic books would be the end of moral youth! Rock and Roll would surely...wait... was that LONG hair on a man! Oh the vapors!

Ok, I went a little off but every new thing does change things. There is no denying that there will be massive social shifts but I am deeply confident in human nature. Every advancement we have made seems to bring more of us closer together. The internet is no different. It has created an equality that has never been seen before in human history. For every history nerd who mourned the loss of the Library of Alexandria, you have it! It’s in your pocket and you can make a face to face phone call to someone around the role with it. Something that would have been heralded as MAGIC only a few decades ago.  

So what I am saying is he longing to rid ourselves of tech is a very privileged stance. Many of us would not exist, walk, and god how I’m desperate for self-driving cars, get therapy, get answers from our health communities (in the US.  we can’t afford to go to a hospital to find out if it’s POTS or a heart attack), and for some of us tech is our school, work and social life. Ok done! Close scene temper tantrum/ rant is done and I popped my wrist out. 

Ehlers Danlos and Surrealist Art as Bone Shapes {Chronic Illness Blog}

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Ok so this happened while I was playing candy crush so I need a much better story. Here’s the contest whoever comes up with the best story for how I mangled my wrist gets a  spoonie poster high res jpg. Pirate and grizzly wrestling already taken.

The problem with good days

So today was a learning experience. Any other Spoonies out there get uncomfortable when you have a few good days in a row? I almost start questioning how sick I really am. So today was the end of a good run. In the weirdest way it was almost a relief.

Lesson? I am as sick as I seem, probably more, but I know how to be a sick person. I know what To do with my time.

When I have good days I tend to spin in circles trying to maximize all of it. I have been doing this long enough that I know not to do housework. I am fundamentally fortunate to have children and a husband who do most of the housework. I did a touch of gardening and did grocery shopping. I was watching the chickens and went to the farmers market. I even redid the mermaid illustration. I know that might not sound like a lot but just being able to get in the car drive somewhere and feel hopeful tat I will be able to run an errand and get home with out: fainting, falling, or dislocating was a rare thrill.

The Specter Notes From A Wheelchair {Chronic Illness Blog}

 

I have a specter in my home. It haunts me. It hulks in awkward corners and it always reminds me that it is waiting for me.

I have been told I should see this as a good thing. I am privileged after all. Ridiculously so to be able to have a wheelchair made specifically for my body that is a luxury rather than a must…for now, as its’ glow in the dark shine of the shadow reminds me.

I live in a very small home and this chair has no interest in hiding. It does not fit in any of our closets. It cannot clear the door to our garage. If it lives in the car there is no room for dogs or groceries.

It is living right now in my living room in front of one of my numerous bookcases. My children find it an entertaining extra seat to rock back and forth and see how many tricks they can do before I kick them out. I don’t want them to play with it. I don’t want to visual of them in a wheelchair. I do not like the visual of me in a wheelchair. The cats, however, love it. Laundry has found it a comfortable place to rest and be ignored.

It isn’t that I do not need my chair. I need it FAR more than I use it. Part is annoyance. I am STUBBORN. A large part is that it is not safe to use on city or town streets. Trust me the ADA does not begin to cover crossing streets, ramps to doors, and small pets and children darting in front of a power chair that takes 5 seconds to stop. If you think 5 seconds is a short time you have never raised a toddler. To badly quote Dr. Who “Don't blink. Don't even blink. Blink and you're dead. Don't turn your back. Don't look away. And don't blink.” It is generally easier to use my canes…unless I’ve dislocated shoulder, wrist, or more recently elbow (I know! Had no idea either that you could do that!) Like most of my life it is an ever-changing balancing act.

I feel guilty every time I look at it. It was expensive. I should use it more. It really helps when I do (unless a curb dumps me on the ground, seriously I would make THE best YouTube videos). Most of the time I’m just not ready, or it’s too much trouble. I can’t wrangle it on my own.

Yes, I am privileged, I have a choice to use my chair. I HAVE a chair. A really nice one. It is a complicated relationship with my ghost of future mobility that right now is blocking my view of some of my favorite books.