learn from the animals

To say that life has been stressful lately is an understatement. We're in a war against Iran. We're lead by an insane, murdering nazi, prices for everything have gone beyond sky high. Now we're in the stratosphere. From food to gas, most people are struggling. Women and LGBT people are actively being targeted, assassinated and having their rights taken.  

I feel angry, fearful, panicked and heart sick. 

But I can't feel that way all the time. Like the bombed Lebanese smoking a hookah amongst the ruins of what used to be their home. Or the teacher playing music inside the remains of a destroyed school. Art, music, laughter and love will always drown out the hatred of evil.

So I have been...

Making art. Making time for friends. Taking care of my body. Keeping up with my medical appointments. Loving on my puppies and trying to help people I love not feel overwhelmed.

My son is constantly stressed to the max. I think COVID really broke him. Now he shuts everything down with a "no." He struggled emotionally before all of this happened, but it has really become worse. His anxiety and depression don't seem to be at all touched by his medication anymore. 

After a recent breakup (where she broke his heart.) I took him to a town close to us for a break. I found this beautiful park with a massive pond and we just sat there and watched.

 
As I soaked in the beauty of the spot I could feel my shoulders soften from up around my ears. The tightness in my chest relax like a rope being untied. My breathing become deeper and more fulfilling. Changes that I wasn't even aware I needed.

Nature is a tonic for these times. And I need to remember that. Hug a tree. Swim in a lake. Look at birds. Go slow with my dogs. Nature is the best teacher of all. She can be vicious. But there is also a lot of love. She is slow moving. Slow growing. She takes her time when she's healing. 

The animals teach us as well. They too go slow. Enjoy the little things (like eating the same food for breakfast AND dinner.) Make time for play. Show each other new things. The old teaching the young.

Spending time in my garden has also been helpful. I think of it as an "earth detox." Where I just pour out all my stress and worries into the soil where it is composted like dead leaves. 

I realize I'm very privileged. I can afford the things I need. I don't live in a country that's being constantly bombed. The people I love are still alive and well. I'm not rotting in an ICE detention center. I'm in a healthy, loving relationship. I have a lot of resources and options. I'm a rare minority in the world.

I can hold both things. Both can be true. I can be sensitive and aware of the horrors of our time. While also healing myself in art, nature and love. I can take care of myself with food and movement and also be aware of my tremendous privilege. I can morn the lost rights of women, the disabled and people of color, while also laughing with my friends. 

It's not easy and it comes with practice. I think my background as a therapist is hugely helpful. But every day I try. Luckily I have my two beautiful puppies to lead the way. 

 

Hey Me! You're Disabled Dummy!

Holy hell. I had a big "aha" moment the other day. 

I needed to complete a certain number of hours of training when I renewed my license. A very large number of hours. I've been procrastinating completing them. This past week I finally got down to work. It took me about three hours, but I finished one course successfully. 

Then I spent the rest of the day exhausted and seeing double from so much reading for so long.

Completing just a very small section of what was being asked of me left me feeling physically ill. Why was I putting myself through this? 

No... seriously... why? The more I thought about doing this 10 more times the more nauseous I became. Was I even this person anymore? Didn't I leave all this behind because I'm disabled and can't do it any longer?

Yes. Yes I did. And no, silly. I don't have to do it 10 more times. I don't have to do it ever again if that's what I chose. Because why put my brain and body through that? I can help people in many other ways.

I feel like I've been in limbo ever since I left work. At first I was too ill to do hardly anything. But the last (almost) two years I've been torn between art and therapy and not really doing either that well.

I've always been an artist. I am an artist. I adore making ceramic pieces, drawing and painting. It's time I drop all the studying, quizzes and shit that makes me ill and get back to creating things. Like many disabled women artists that came before me.

Frida Kahlo

Yayoi Kasama

Lisa Bufano

Emily Barker

Judith Scott

And many many more. I'm honored to join their ranks

Me taking a much needed chill pill

The Chronic Fatigue Sled

I've been in a tough spot the last few weeks both physically and mentally. I've been pushing myself really hard physically to try and have a "normal" life. Cleaning my house to have company over, entertaining my sister and baby nephew, cooking for them, cooking dinner every night, walking the dogs, playing with the dogs, feeding the dogs, holding the dogs, doing laundry, cleaning our bathroom, vacuuming, corresponding with friends and family. All of this has led to a series of crashes where I can't seem to sleep at night or get out of bed during the day.

I'm also trying out a new pain medication that could be giving me insomnia and more fatigue. I'm not sure since I always have both pretty consistently. 

Me on an Icelandic Glacier 11 years ago when I was healthy

This morning when I just couldn't get up, even though I was mentally excited to go swimming with my mom and spend the afternoon with her, I had a thought. The weight on my body dragging me into bed feels very physical to me. The way I push myself every day and how hard I push feels incredibly physical and mental. Beyond what healthy people experience.

I realized that I felt like one of those arctic sled dogs. Alone and hooked up to a sled weighed down with boulders. On a regular day I push and push through the snow trying to make progress on a steep mountain. So steep I can't even see the top of it. 

Then I just can't go on anymore and I collapse. Sliding back down the trail. Letting the sled pull me down.

When I've recovered enough I start pushing again. Running up the snow, pulling the sled. The weight of the sled may change depending on what's going on with my body. The only thing I know for sure is that I have this urge to keep pulling it up and that back sliding is un-avoidable. 

Days like today feel like that. Like the weight of the sled was just too much and it pulled me back into bed as time slid past me. Well into the late afternoon I was finally able to get up. I feel the pull of needing to accomplish things. Anything. And I push again.

I think what I need to learn to do is pull a little and rest. Pull a little and rest. I need to implement my vacation rules. No more than one big thing per day. 

And if there are days where I just stay in bed and rest... that's ok to.

When Stressed... ORGANIZE!

I have a beautiful coping mechanism when I'm stressed out. I clear through my crap and organize what I keep. My medications have been begging for a spring cleaning since 2018. Hah. And my bedside cabinet has been many things over the years. All of these got a good cleaning inside and out, then a thorough organizing. 

The biggest change however came with my daily medications. I've been bursting out of my pillbox for months and months now and I can never seem to find one big enough for all of my needs. Enter the small glass jar.

I scoured the internet for a gross of glass jars. Spice jars, tiny jam jars, but landed on these little "honey" jars. The shape makes them very easy to hold and the lid is simple for me to screw on and off. Unlike my pill box's which were very difficult for me to open and close. I was constantly popping pills out all over myself and the floor. Not good when you have animals in the house.

This is what I was using. A typical three time a day plastic pill box. I've been using this style for about six years now. I literally wear them out like shoes. Crazy.

Now each time of day and day of the week has it's own jar. I have tons of space in case in the future new meds or supplements are added on. Horary!

I used a white paint pen I had laying around for the top. I hope it stays. Ideally I'll put some kind of a top coat on it. Either using nail polish (expensive) or a Krylon spray. I'm hesitant however since neither are food safe. So for now I'll just be careful and see how they hold up.

I feel a weird sense of relief having all of my needs organized like this now. My fan is in position for summer breezes, I have Gatorade and bottles of water by my bed for bad days, I know where my "Pain" basket is and what's in it. Everything is all put away neat and tidy. This is what my "self care" looked like today.

Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Finding my Limits

My husband is away on a business trip and I felt a huge urge to cook last night. I had all the ingredients to make some things that I didn't think sounded very difficult. It felt within my wheelhouse. It didn't go great.

I managed to finish off what I had started, but only out of sheer stubbornness. I didn't know where my boundaries were when it came to cooking, but I sure found out the hard way. 

It was the first time I could feel my energy failing mid-work. I could feel myself getting more and more fatigued. And I'm not talking just my muscles. That feeling I'm used to. This was something new. 

It was a slow energy drain. Like a bucket full of water that has a leak. I could feel myself getting more and more tired with each thing I did. Even just standing looking at what was cooking. It was honestly a terrifying feeling. 

I felt scared that I wouldn't be able to finish before I had to go lay down. Frightened that I bit off more than my body could chew. Shocked that such a small thing could drain me so quickly. Regretful at my decision to cook so much and not just wait for my Mom to help me. And sad for myself that I was having that experience.

The whole thing wasn't all bad though. I don't know my limits if I don't test them. I also won't understand what's going on with my body if I don't pay attention. To have that very real feeling of my energy draining rapidly due to being overloaded, as scary as it was, is also helpful. My disease isn't just all about my muscles.

I told my husband the other day that I wondered if my need to rest mid way through the day is due to my doing so much when I'm awake. Especially physical things like showering, dressing, putting things in the house away, etc. I walked a touch over a mile yesterday just by doing these things. That's quite a bit for me.

The tricky thing about my "limits" is that they are constantly changing. What I can do today I have no guarantee of being able to do tomorrow. So that makes me feel in a bit of a panicked rush. I have a constant feeling of pressure to do everything that I can today because it might be the last time I can do it ever.

(I wanted to take a picture of some food that got dropped on the floor as I was cooking, but I didn't want my dog to get it so I hurriedly cleaned it up instead. I always tell my husband "It's not a day with me unless I drop something.")

Road Blocks

There are certain events in my life that feel like road blocks. Success will lead to one path and failure will lead in another direction entirely. I have such a road block in 16 days. My licensure examination. The culmination of my entire education and training will lead up to my success or failure at obtaining a piece of paper. But that piece of paper means a lot to me.

Every therapist I know has failed their licensure at least once. Most up to three times. But I have high expectations for myself. I don't want to keep shelling out $100 and putting my health at risk each time I go take that test. I want to be over and done with that part of my life for good. I hate loose threads.

So if I don't pass, I can pay money, wait three months and take it again. That's one path. Or I can decide not to take it. I wouldn't do that, but it is an option. If I do pass I'll be officially, legally licensed. FINALLY! I'm not planning on practicing clinically any time soon, but mentally and for my future it would mean a lot to me.

It would give me closure. Give me confidence. Open up more doors for me in the future and for money making opportunities. Make me feel like a success. Yes, it's important.

My world right now revolved around those 16 days.

Remember How to Play

Why so serious?

My son told me last night that he's taking a break from Facebook for his mental health. I applaud that level of self care. Another important thing to remember with all the stress people are under right now is how to play. Your inner child needs to be fed more than just ice cream and Taco Bell. They need to play. YOU need to play.

When was the last time you played?

Do you remember how to do it?

Play is vital to keeping your mood up, interacting with other people in positive ways and helpful for your relationships! Here's some ways that my family and I play. 

Go for a nature walk and touch everything.

Go to an art supply store and buy whatever looks fun. Even if you've never used it before. Make yourself an art basket and keep it out where you can see it. 

Do some doodles.

Take pictures of yourself making funny faces. You DO remember how to make a funny face... right?

Go to a thrift store and "rescue" a stuffed animal. Or better yet, find one in a dumpster! Take it to a public laundromat and clean it all up. Give it a second home and a new life.

Paint your toes the color of the rainbow and find some shoes that look like muppets. 

Make funny faces with your pet and take pictures. Or just rub and nuzzle on them.

Buy yourself a tiara. Because everything is better when you're the boss!

Stop and smell EVERY single freaking flower you come across. Even if it's just at the store.

Go look at some art. 

Blow some bubbles, or a pinwheel.

Do a puzzle. Especially with someone else.

Paint a picture of your pet (even if you think you're not any good).

Other ideas:

• Sing your favorite song really loud
• Make yourself cupcakes
• Go outside and play in the mud
• Make a fairy house out of stuff you find
• Start a new hobby (like air plants or Yoga)
• Taste something you've never had
• Have a pillow fight with your partner
• Try a new musical instrument
• Buy some sidewalk chalk and decorate your street
• Make a nature crown for your head
• Look for interesting bugs
• Learn to juggle tissues
• Teach yourself tarot or runes
• Make a big batch of something delicious and share it
• Dig out your old video games and have a retro game party (ditto for board games)

Ways to stay calm

I have a dentist appointment today. It's my first one in a few years. Ok, more like five years. I'm a serious dentaphobe. As I was tooling up to stay calm before my dentophobia took over, I thought I'd share what helps for me in these situations.

Everyone has something they're afraid of and with a chronic illness you're likely to have to face those fears over and over again. I know I sure have! So here's some tricks that help keep me calm.

1. Timeline. I try and keep it all in perspective. It's a blip in my day (week, month, year) and will be over pretty fast.
2. Bring something to hold. A small rock, shell, Beanie Baby, whatever. It helps me if it's something heavy to help keep me grounded and relaxed.
3. Check your muscles. When I'm stressed I tense up a lot. Checking in with my body, especially if I start to feel pain and intentionally relaxing into it is really helpful for me.
4. Pick a smell. For me nothing makes me happier than the smell of my husband's deodorant. I equate that smell with him. Mix it with Irish Spring and Head and Shoulders and I'm over the moon. But for something like a dentist appointment stealing his deodorant and wearing it for the day is enough. It's like he's there with me and that helps me relax.
5. Be comfy. Many times I would have no control over a situation, but I can control what I wear. I skip the bra and wear clothes that make me feel happy and relaxed.
6. Treat yo self. I can't tell you how many times the thought of a chocolate shake or a caramel apple cider pulled me through stressful medical procedures.
7. Bring a soft blankie. Another trick I've done that was super helpful. Hospital blankets suck, so having my own has been helpful many times.
8. Have someone you love take you. My mom is taking me today, though she won't be back with me. But she would if I asked. That's love. To sit in the dentist office for someone!
9. Visualize. Everyone should have a calm, happy place they can easily go to in their mind. I have at least ten. Use it and transport yourself.
10. Breathe (if you can). It's not always possible to take a deep breath through things (spinal tap, MRI, dental crap), but if you can try and notice your breathing and keep it calm and slow.

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her. 

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

No Homeostasis

In my life right now there is no such thing as homeostasis. I've talked about it before how my health is a constant moving target. That reality can lead to a major increase in stress if I'm not careful. And not just for me, but for my whole family.

Simple things like spending time together, eating together and listening to each other can be very helpful at decreasing my stress. Here's a few other things that also help:

My mom bought me a Wonder Woman outfit and it was a big mood boost. I do feel pretty wonderful for getting some laundry done or even just trying my best today. So maybe there's no such thing as homeostasis for humans? Maybe the only thing constant really is change. Perhaps all we ever have is the present and we have to just pay close attention to it and savor the moment. 

Gentle Reminders

I have a few favorites in my journal. Things I like to go back and refer to. These two are particularly worth sharing today:

Yes!
One of the reasons I love gardening. 

I read a while back on another chronic illness blog that you can't live your life with sickness at the middle of it. I firmly believe that is true (no matter what the challenge is.) When you just go from appointment to appointment or even symptom to symptom you aren't really LIVING your life. You're just surviving. Of course there are exceptions to this. But typically to go from reaction to reaction is more damaging than the thing you're reacting to.

When I say "don't turn into your family" to myself it's a reminder to not just stop living. That's what my grandmother has done with her chronic illnesses and she's miserable. I don't know what she's living for. She just drifts from appointment to appointment from pain pill to pain pill. It's no life that I want to have. 

I try hard to remember this and instead of going from crisis to crisis I plan. I do. I go. I create. I invent. I discover. I explore. I may have to work around or with things, but I'm not letting these challenges rule my life. 

That's what the journal entry you see above was about. A reminder of things that make me happy and that make life worth living. If you're just going from crisis to crisis, always just reacting, then life isn't really worth living. Savor. Enjoy. Play!

Seriously? "Reduce Stress!?"

The #1 advice I read over and over again is "reduce your stress." These articles/books/blogs will often go to on suggest "take deep breaths" or "go for a walk." Now I'm not saying these things don't work, or that it's a great idea to try and keep stress down. But you know... life happens! Like this gem I encountered today.

Are you serious?

I spent an hour on a major company website filling out a detailed application only to have it eaten and vanish when I hit submit. That's real life stress right there. Not to mention I'm having to job hunt again after only being employed for barely a month. But I'm supposed to just not let it get to me and go for a walk?

Well, it's no surprise that I woke up to a bit of a flare this morning. I also was really busy this weekend. And despite my husband making me take breaks, I still managed to do too much. My hands hurt and were stiff. The worst since starting the Plaquenil. I was thirsty all night and just felt sore this morning. Oh! My face is also breaking out. Yeah that's the face of stress.

But back to job hunting for a second. 

This is a standard question all employers ask. I never thought much of it before today. (click on it to see it larger if you don't read chicken scratch.)

So I ended up checking "no" because the descriptive words they used were things like "substantially limits a major life activity." And frankly also because it's not their business. So far I can work around all of my needs just fine. If I required some ADA services or major accommodations that I couldn't provide for myself I might have checked "yes."

I really hate that employers expect you to disclose something so deep and personal in such a way. In fact, I think it's really awful. And there's the "s" word again, right? "What if I mark yes? Will they not hire me because I said I have a disability? If I mark no and later need accommodations will they fire me for not disclosing sooner?" These are real life concerns.

Another reason I marked "no" is that I'm still figuring all this out. Until I know 100% what's going on I don't think my employer needs to know. 

So yes, I try my best to keep stress at a minimum, but some days I'm more successful than others. And after 2 hours on a cruddy website I was rewarded with this alert.

YAY! PICK ME! PICK ME!

I've applied for 5 jobs this morning and I feel good about them. I'm hoping something will come through soon. Now excuse me while I go eat some breakfast (food always lowers my stress.)