Wedding Planning for Spoonies: Inspiration & tips for the chronically ill and disabled

My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.

I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.

I do think this book could be a game changer if I work hard enough on it.

I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.

If you’re interested in helping, email me at spoonielifestyle@gmail.com.

The Disability-Friendly Wedding Planner: Even New Directions

I am back in the saddle again with my book, The Disability-Friendly Wedding Planner, and I’m telling you, it’s gonna be a long road.

The book’s purpose is to help disabled and chronically ill individuals plan their weddings, but I’m not entirely sure it’s doing that right now. I’m talking to one agent who hasn’t gotten back to me yet after submitting my manuscript, and I nervously await the next steps.

Additionally, or not additionally rather, the book has been slashed a bit. It no longer covers as wide a net of disabilities as I had once liked to. Now it only covers mobility, chronic illness, and chronic pain, which when you think about it is pretty huge. There are lots of chronic illnesses and chronic pain conditions out there, and lots of varying degrees of mobility.

I have lots lots lots of research to do, and if you’d like to help, email me.

Mental Health Awareness Month: Schizoaffective Disorder

There’s been a lot of talk about neurodiversity in the media at large in the past few years. 99% of neurodiversity talk has been aimed at the autism spectrum and how autism is basically just fine and spiffy, just different.

While this is good and I’m happy for any positive representation a group is getting, what if I told you there were different ways of being neurodivergent?

Just as autism exists on a spectrum, there’s a spectrum for pretty much everything, from gender to sex to fibromyalgia. And when it comes to neurodiversity, I’d like to introduce you to the horror film of spectrums: the schizophrenias.

If you’ve ever been in a group mental health setting, you’ll quickly realize something: the people with depression quickly achieve “most normal” high status, followed by those with anxiety, then those with a mix of depression and anxiety. I know those with depression and anxiety have rallied for years for representation and less marginalization, and I’m telling y’all, you basically have it in an IOP, therapist’s office, or mental hospital. Then, most people hate bipolar people because they have a fucked up mom or kid who can’t do jack shit. This is in the mental health facility. Still in the facility, the descending rung is borderline personality disorder, because those people WILL fuck you up and run off with your wife or something? Give you heroin? And way down, low in the mud, not even on the ladder, are the folks on the schizophrenia spectrum.

Yes, tumblr, I hate to tell you that there are disorders more than anxiety and depression. I would love to tell you that there isn’t prejudice and privilege within the mental health community. But as within any community, from the disabled to mental health, there is.

You have high functioning and low functioning, moderate to severe. People who are guaranteed to fuck you up. I’m not saying moderate depression or high functioning anxiety are cake walks but they’re walks in the park compared to the schizophrenias. This is due in part to representation. People who are “more capable” have the tools to have more of a voice and gain more respect from their communities. Stigma is generated for other mental health groups due to lack of resources to advocate for themselves.

Typically speaking, if you have time to advocate for yourself, you aren’t working. Which leads to scrutiny from society at large. Unless you can make it your job to be an activist, mental health of any kind gets swept under the rug.

Consider all the spectrums. You’re on one. I’m on several. We’re 15 billion different colors of rainbows. Let’s coexist.

How to Survive a Night of Insomnia

Lately I’ve been getting up at 11pm, 1am, or most recently, 2am, and despite my best efforts, have been unable to fall back asleep. I’ve tried everything from meditation, medication, to alcohol, and I still can’t nod off. Unfortunately I tend to do stupid and impulsive things at night, especially just before dawn. I’ve compiled a list of things for my fellow insomniacs to do while they’re up in the early morning.

1. Read a happy book.

Don’t read anything scary. Not a thriller. Not a mystery novel. A book. A happy book.

2. Try one night cap a week.

I take a shot of whisky when I get really, really desperate. Just one. If you struggle with alcohol I’m sorry I wrote this part and please don’t do this. It doesn’t put me to sleep but it calms my nerves and I actually don’t do stupid things due to my anxiety and rumination.

3. Write something.

I work on my book, The Disability-Friendly Wedding Planner, blog posts, and my 27 memoirs, as well as my running diary.

4. Listen to binaural beats.

These have never in my life put me to sleep but they help with pain and anxiety.

5. Hop on Twitter and make friends.

Twitter is my favorite social media platform. I can spend hours on there discovering new things.

6. Daydream on Pinterest, but only a little.

Pinterest can be triggering for me, so I tend to stay off of it. But sometimes it can be fun.

7. Virtually volunteer.

I virtually volunteer at a few places and get my work done overnight, because I’m going to feel horrible during the day anyway.

8. Play with the doggy.

This is the best part about early mornings. I have an elderly dog, and she’s only active in the mornings and evenings. She sits in my lap, dances around, and acts cute. Unfortunately the affection ends after I feed her at 6am. Gee, I wonder why!

I hope this helps some of you. Insomnia can be a real bear. I haven’t figured out the cure for it yet. We’re all in this together!

My Dream: The Butterfly Tiny Ranch

pink box with gold border "my dream: the butterfly tiny ranch" with a pomeranian puppy wearing a pink scarf

Sometimes, when life gives you lemons, your brain makes lemonade.

Lately I’ve been dreaming of my Butterfly Tiny Ranch, my goal I’ve had since college to reduce my carbon footprint and feel like I could maintain a piece of land.

I don’t think I’ve asked too much from life when it comes to material possessions. At the same time I’m also the type of gal who likes to daydream and when all my little dreams I’ve had since childhood collide into one solid, beautiful picture, I get so lost in the idea I can’t sleep at night.

There are two things I’ve always wanted: a tiny house on some land and a bunch of dogs. A refuge away from the world where I could have snuggles, nature, and grow my own things from the earth.

By tiny house, I mean more like a tiny cottage – blue and white with wooden shutters, all on one level, with a Japanese soaking tub. It would be elegant and old-timey, like an 1800s guest house.

It would be just enough space for me and to entertain one person. That’s all I’ve ever needed anyway.

The land would have an elaborate rose garden with a brick walkway going through, followed by a vegetable garden, then an apothecary garden.

And then… there would be DOGS!

The supreme queen would be my dog of nine years, followed by a pack of Pomeranians and papillons, my two favorite dog breeds. I would have a dog wash station by the side of the house. A mobile dog groomer would come to pamper my pups.

The Monday Blues are Grateful For You

blue pain on wood with a heart imprint white text overlay " you don't know what you have till it's gone: the monday blues are thankful for you"

I haven’t had a regular Monday morning since November of 2018. At the time I was a receptionist for a seedy car lot and trying my hardest to keep up. Every morning I woke up at 3am for my strenuous 1 hour morning routine, followed by my hour commute to start work at 5am down I-35 in ridiculous traffic. My car was a 25 year old clunker with no airbags. In short, it was a dangerous journey.

I didn’t get along with the folks at the car lot. I was too genuine, and too disabled. This was year two of my chronic vomiting, and one Wednesday I ran from the receptionists’ desk to puke for about five minutes. There was another receptionist at my post. When I returned, I received a harsh reprimand and was promptly fired. The whole incident was so jarring I haven’t interviewed for a job since and have decided to make it on my own freelancing.

That’s not to say I don’t want a job. I long for a typical Monday morning with three cups of coffee, doing my hair and makeup, putting on cute clothes and rushing out the door into the chaos of traffic. I know it sounds insane, but as someone that’s been homebound for two years now, there are some “awful” things I wish I had in my life. Some tethers of normalcy to give me the crown of worthiness.

However, there was a time I hated my morning or night commute. There may be certain things we hate in life or dread, but they serve a purpose. Our commutes in our little cars take up little spaces in the world and show us where we fit in society, seamlessly and dangerously, knowing one crash could take us out forever.

A commute’s potential purpose is to gain insight about the world. That asshole who cut you off – have you ever considered you might have been the asshole? Or maybe they were rushing a baby to the hospital?

Another is to gain insight about the world. We are cars on a road part of a system that crosses continents. We are so, so small part of something so huge.

What about gaining insight about yourself? What do you do in the car to stay calm? Do you listen to angry music? Soothing music? Podcasts? Do you feed your mind, your emotions, or your soul?

Whether you make it to your destination or not, I’d say your Monday morning commute is thankful for you. Negative experiences – or experiences we think are negative – are grateful for you because they get to serve their positive purpose: to allow illumination in their darkness.

Issues With Christian Dating

teapot with manicured hand with text "issues with christian dating"

As a recovering Christian who still loves Jesus but objects to large parts of the fundamentalist Christian culture I was raised in, I have some reflections on Christian dating in the light of what’s going on in my personal life.

Most people know that back in ancient times, the 1980s, many people didn’t cohabit. Nowadays for the most part people do cohabit, even if they are Christians. Not so if they fall on the fundamentalist evangelical spectrum, or if they have something to hide.

This makes dating a bit like a high-stakes game of poker. You put on a poker face with the intent that if you bid all, you win all, and you’re able to feed yourself at the end of the night.

In this poker round, you are both the player and your bid. You view your date as the pot. Likewise, your date sees themselves as the player and the bid and you as the pot. What I’m trying to say is, you’re both greedy, hungry, anticipatory, and there’s more than fun and games going on here from the minute you message someone on OK Cupid. You’re objectifying each other. Is this person a good mother? Will he be a good provider? Is he a spiritual leader? Will we make a good home together? What will they give me?

What I’m trying to get at here is that there is no enjoyment of the other person for who they simply are, and there is no fun in dating.

For many high-anxiety types who come from fundamentalist homes, realizing the first time I just sat back and relaxed – or enjoyed myself – was a big deal. I was out of college and hiking on my neighborhood trail. I wasn’t analyzing anything, trying to grapple with hidden meanings, or attempting to ascertain whether I deserved to be viewing nature in all its glory or not. Nature was her own thing. She was cool all by herself. She didn’t serve me. I wasn’t here to get anything out of her other than to see what was up. And, I wasn’t here to persuade nature of anything. I was just walking down a dirt trail, tripping over tree roots, getting sweaty and dirty, purely myself. It was the first time I had done something like this. And I enjoyed it for what it was.

Likewise, I believe healthy secular dating adopts this model. You message someone on Bumble because they seem interesting and you want to see what’s up. There are no wedding bells going off in your head at your first coffee meet up. All this is is a relaxation into a person. If the relaxation turns sharp and uncomfortable, you tell the person goodbye, and you ease on into the next phase of life, whether it involves another person for a while or not.

I’m not saying secular dating is without its pains and pitfalls, because anything involving human beings is messy. But I do believe it has far less dangers than the traditional Christian dating model.

Christian dating is, at its best, objectifying and idolizing, whereas secular dating is far more down to earth and honest. If you want to get to know someone, it’s best to see them as a human being instead of a potential spouse. More open conversations flow that way because there’s less stress and pressure.

I may be writing this because I’ve been burned, but I’ve had other girlfriends coming from fundamentalist evangelical homes echo my sentiments. At the end of the day, it’s up to you whether you want to walk down an aisle blindfolded or slowly acknowledge someone for who they are.

How to Create a Medical Powerpoint

Tablet passed between patient and doctor with text "how to create a medical power point and why you should spoonielifestyle.com"

In one of my earliest posts about how to talk to your doctor and be your own advocate, I go over how to use technology to communicate with your medical team to get the results you need. There I strongly suggest making a medical powerpoint. This post outlines what a medical powerpoint looks like and how you should structure yours.

Why is this useful?

A medical powerpoint keeps you organized – and looking on-point to your doctors. Doctors are people, and people generally have to be won over to gain their respect. It’s easier to negotiate your health, or work with, a doctor who respects you. Communication is smoother.

Not to mention, if you’re feeling really sick, it can be hard to remember what to talk about, or even speak. Having a powerpoint on your smartphone or tablet doing the talking for you can remove large obstacles in communicating with your doctor.

Note: If the doctor refuses to see the powerpoint, read from the powerpoint and go into a monologue.

How to Make a Mobile Powerpoint

  1. You can make a powerpoint on your computer and email yourself, therefore accessing it on your smartphone.
  2. You can create a Keynote powerpoint on your iPhone and access the powerpoint on your smartphone.
  3. You can create a powerpoint on your tablet using Keynote, Powerpoint, Amazon Docs, or another app.
  4. You can email your powerpoint to your tablet from your computer.

Title Slide

Have the doctor’s specialty, date of the appointment, doctor’s name, and your name. This is to improve organization. Save the powerpoint as the doctor’s specialty and the date of the appointment.

Updates from your medical team

If you’ve been to any other appointments, had labs done, tests run (such as MRIs and CAT scans) even if they were duds, put them here. This will be an ongoing, ever-growing list of slides.

Current Issues/Symptoms

These are symptoms you’ve experienced in the past 2 weeks. Bold new symptoms you haven’t seen before.

Timeline

This is your most important slide. Timing is crucial to a diagnosis as it reveals whether a pattern of events caused the illness and what, as well as duration of time. Try to keep this to 1-2 slides.

Symptoms

These are the overarching symptoms you have been experiencing chronically over time. If a symptom has lasted more than 3 months, put it here.

If you are experiencing pain, try to figure out where it is with deep breathing (if you don’t already know) and google a pain scale to gauge it.

Preexisting conditions

Unfortunately, you do have to put down any illnesses you already have, because they may be causing your problem.

Helping Yourself – Demonstrating Strength

Doctors don’t like whiners, like anyone else, and it’s their job to be complained at. Even if you have a legitimate illness, it’s important to negotiate with the doctor that you’re not just sitting on the couch eating potato chips. You must show the doctor you are strong and worthy of respect. List things you do to take care of yourself, whether it’s a regular nail appointment or a walk in the park.

I know what I’m talking about

Basically copy and paste this. It shows the doctor you know what you want from them and therefore know what you’re talking about. This is more than what most patients can say, “I can articulate how I want to be treated.” You will earn respect points.

Medication List

Have a list of your prescription and OTC medications, such as Tylenol, their dosage, and frequency.

Supplements

Supplements do not fall under the same category as medications. These include vitamins and natural herbal supplements.

Questions for the doctor

Before you go to the doctor, brainstorm a list of questions to ask them.

Humor

Find some medical-related humor to put at the end of the slide. See if your doctor comments on it. Don’t ask.

In Conclusion

You can win your doctor over and communicate effectively with just a little extra leg work. Don’t worry, you can do this!

Keep Fishin’

Usually, no matter how bad my pain flare is, I wake up at 5am at the latest, do Tai Chi, have a blog post out by 9:30 edited a few times with a graphic, have eaten breakfast and downed 3 cups of coffee by 10am.

Presently I’ve been in a stress-induced pain flare. The pain has been worse than when I’ve first been diagnosed with fibromyalgia, when I would scream at night, sob while I read the bible, all because of the physical pain I was in. It was a nightmarish experience. Once I started the meds and began to get better, I thought that would never happen again.

The past 3 weeks I’ve had horrible insomnia, which has been a plague for me on and off for about two years. Last night I slept 12 hours.

Normally, this would not be a problem. But I’ve been applying for virtual volunteer positions, and I had an interview at 10am, and woke up at 10:55am.

Well, I may have missed an opportunity to make the world a better place, but my body feels much better and I may actually be able to do Tai Chi today.

What I mean to say is, for anyone else going through this, don’t give up, or as my favorite band Weezer would say, Keep Fishin’:

You’ll never be
A better kind
If you don’t leave
The world behind

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

You’ll never do
about:blankThe things you want
If you don’t move
And get a job

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

Waste my days (Waste my days)
It drowns aways (Drowns aways)
It’s just the thought of you
In love with someone else
It breaks my heart to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

You’ll never be
A better kind
You’ll never be
A better kind

Waste my days (Ohhh)

Keep fishin’ y’all.

(Yes I know these are super lazy posts but I’m trying to still crank something positive out every day. Wait, that wasn’t a positive statement. It’s okay. I’m doing the best I can, me.)

It’s OK

I wasn’t sure what to write about today.

I woke up at 2:00AM in extreme pain, but that’s okay. It went away eventually and I fell back asleep.

As I erroneously look forward in my life, ever playing the fortune teller, I see black clouds hanging ahead. But I know that this is false thinking, and not what is actually true. Life can be hard sometimes, but it’s our perspectives that make seeing visible. If you purposefully put a towel over your eyes, you cannot see anything in your world. The world is dark and precarious. However, you are responsible for this. You can realize you have something covering your face and take it off, or you can see it in your hands and not put it on.

I juggle with the face-cover, sometimes blinding myself and sometimes enlightening myself within the cycle of minutes throughout the day. And that’s okay.

I’m human. So are you. We all are.