All or Nothing

My mom and I were talking yesterday and I mentioned how if I'm going to change a habit I am "all or nothing" about it. Doing things a little bit at a time never worked for me. Case in point. My wonderful husband and I have been together 33 years. I was pregnant within 3 months of dating (the second time around.) SURPRISE! And we moved in together two weeks after I found out. We were married less than a year later. All or nothing. And that worked out just fine for me.

So I don't just start eating one Vegan meal a week. I go full Vegan. It's going great.

I don't just "watch my spending." I stop spending completely. Well, now that Target's off limits (for supporting ICE) there goes a giant will to spend. I'm also in the "purging" phase of the year. Cleaning things out. Giving away. Not the acquiring phase, so that helps. 

A beautiful orchid I brought back from the dead.

A friend gives me her dead orchids and I bring them back to life.

Honestly I really want for nothing. I have a closet literally bursting with beautiful clothes. I have shoes that keep my feet comfy and ankles stable. I have a travel wheelchair, big wheelchair and walking sticks. I have a stunning new car. A warm house to keep me safe. Plenty of good food to eat. Books to read, TV to watch, a soft bed to rest in. More than enough blankets to wrap up in. Hot water for bathing. You get the idea. In many parts of the world I would be considered RICH.

Most of all I have many people who love and care about me. That feels amazing. So no... I don't need to go to Home Goods and get that Valentines placement. I want to go to the pottery studio and create something that didn't exist before I made it.

I don't want to go to Costco and buy new pillows. I want to get berries to feed my mitochondria. I want to walk my dogs, hug a tree, watch the birds, build a birdhouse, tend my garden, hug people I love. All free pleasures in life. I'm all in.

Are you a mini or a maxi?

I've been a massive maximalist most of my life. But deep down inside has always been a minimalist dying to come out.

I'm a maximalist in all ways. Spending, decorating, buying clothes for my dogs, eating, loving people. It's very easy for me to go way over the top in all areas of my life. My husband will ask me if I want something now, or later? Both is always my answer. Did I want to go on a trip for our 30th anniversary or get a nice piece of jewelry? Both of course. Would I like the appetizer or dessert? Uhhhh BOTH!

See the pattern? 

Restraint, budgeting, minimalism, living withing my means, decorating within the boarders of my walls... nope. Big no to all of that.

I'm an expert money spender!

2025 is knocking. It's the perfect time for reflection and change.

1 - I want to be much less of a consumer. Both with my wallet and my mouth.

2- I want to de-clutter my environment. Donations and Ebay selling are the best way to purge.

3- I want to be more on top of my finances. As long as I'm not working (and I don't think that's changing soon) I feel I need to be more responsible about my budget.

4- Be out in nature more. 

5- Be more active with the dogs & take them out with me more. That always takes a ton of spoons, but I feel it is very worth it.

I also want to embrace new ways to self sooth that don't involve hurting myself (by over-eating or by over-spending.)

WHEW! That's a big list. Notice how "weight loss" isn't there?

When I put pressure on myself by turning my focus on that, I fail. I'm tired of failing, so I'm not making it a goal right now. My hope is by trying to do a better job of taking care of myself and simplifying my surroundings, other things will fall into place.

Happy New Year.

I wish nothing but amazing things for us in 2025.

Times and Tides

I have learned in my 51 years on this planet that if I pay close attention, nature is the best teacher of all. That's one of the things I love most about Polynesian culture. Although it's not the only culture that lives so close to the Earth, it's the main one that I know and admire. Living on a volcanic island, like Hawaii and Iceland, you can't help but live in sync with nature. You are hugely dependent on nature for your survival. Any second you could be wiped out by her wrath, or enormously rewarded. We've lost that connection in more urban environments. No matter how many parks and green belts there are.

Not the same as a park

One of the big lessons nature taught me is that no growth can occur without destruction. Usually complete and violent destruction. Mother Nature loves nothing more than a clean slate. I respect that hugely. I look back on my life and see my own biggest periods of growth occurring after total devastation.

The Hawaiians also know this, which is why they focus on the "now" so intensely. Everyone has heard of "island time" and "hang loose." To me those mean exactly what my mother practices and knows so well. "Life's too short and precious to rush through." It's very easy to get caught up in the pressures of everyone else around you and start rushing through everything, even when there's no need. Rushing to our cars from the store. Rushing through the store. Rushing to the store. What happens if we're late? Typically nothing awful. You're just a little late *but not by "Island Time!"

Hawaiians also take full advantage of all of nature's gifts. The original native diet was very high in fish and fruits. It wasn't until American's came to take over that we introduced Spam. Although the Japanese labor force that was imported in to work the pineapple fields can take the blame for rice. I felt like I had never eaten a banana before until I had an Apple Banana in Hawaii right off the tree. Here we shop at the grocery store, or if you're very lucky, the Farmer's Market. But we typically eat far from nature. 

I'm very guilty of this. Frozen pizza, macaroni and cheese, heck! Even just cheese and yogurt. All are heavily processed foods that are known to contribute to disease. Does that stop me? No. It's what I grew up with and what I love. Though culture can and does change. Again, nature taught me that nothing is permanent and everything changes all the time. Even when you can't see it. Seashores are being eroded. Soil shifted. Rocks worn away. Diamonds created from stardust. Humans from blobs of cells. 

There is nothing from nature on this truck

Every so often I feel like I wake up from a culture induced stupor and wake up to the tides of nature. Fall has historically been one of those times for me. The changes in the natural world are so profound at this time that I can't help but to take notice. This always has been a time of inward reflection for me. This fall I didn't like what I saw.

I saw myself self-sabotaging over and over and over again. Doing nothing to support my own health. And little that nurtures my mental well-being. I have been shoving down the anger and grief over the death of the main male figure in my life, my Grandfather, who passed violently three short months ago. I have been feeding myself to comfort mentally rather than feeding myself what I know I need physically. I have been taking great care of others and not so great care of myself. A tried and true pattern of mine. I put other's preferences ahead of my own and lose focus of my own path as it crosses with others.

I am painfully aware of how easy it would be for my to lose myself completely to my new family. Stop going to the gym and just focus on them. But I have goals and I need to re-focus right now.

My Goals (what I want to re-focus on)

1.  My health. Eating the foods I need to eat to be as strong and healthy as possible. High fiber whole foods that will product short-chain fatty acids in my gut microbiome. Not long. This also includes going to the gym at least three times a week to work on my strength and flexibility. 
   
   
   
2. My creativity. Setting aside time for writing, ceramics, drawing, painting, whatever I want to express what's inside me.
   
   
3. My emotions. Processing my feelings about the horrible death of my grandfather.
   
   
4. My empathy. Spending time with my son, my mother and my new family. Also in here I put completing my CEU's to maintain my MFT license.
   
   
5. Making Money. Selling our unwanted stuff on eBay and maybe starting a support group of some kind. Getting back to working one or two days a week.

To accomplish my goals I need to be committed. Dedication and focus is what I need right now. Because there will always be more laundry and I don't need mac n' cheese.

I rebuke you Satan! 

Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

STILL Adapting Our Home

I've learned to be much more patient about makovers and changes in our home. When I talked about "Adapting Our Home" back in February, I knew it would be a slow process. One we actually started in November. 

This was our first project. Converting the dining room into my husband's new office. All we need now is some different lighting. We have a temporary café table set up that can stay until I need to use my chair in the house. It is a space that works well for us. We both enjoy the coffee bar and the mini fridge is much easier for me to get things out of then our hard to reach big fridge in the tiny kitchen.

We just need to replace this chandelier with more appropriate lighting.

We keep trying to have a yard sale, but the weather has been against us. Our new projected date is April 1st. We have a garage full of items that will help us buy what we need for our new livingroom.

We need to do this in stages due to finances. It also reduces the stress of change for my man. He makes me go slow and consider things more and I goose him into action. It works out well.

Right now we have a dominating entertainment center. 
We will trade it in for a large flat screen TV on this wall.

What I'm most looking forward to is getting our couch out of the path of my wheelchair and away from our front door. But with the entertainment center gone, we could have room for a glorious "L" shaped couch... like this one I saw at Costco. Drool! Drool!

Max will never leave this couch again once he has a spot in front of the window.

I promised my husband he could have a lovely lit, corner bar in a recessed spot by the couch.

We used to have hundreds of DVD's in here. But who needs DVD's anymore?

I want a similar lit cabinet and some stands for my precious house plants.

It will look lovely and echo the bar.

The purging will continue right up to the yard sale. It will be a challenge to get rid of our couch, entertainment center and other huge items when the time comes. I'm thinking of using Facebook for that part. I really wish I could just wave a wand and have it all perfect. 

Permanent disability denial

Well... THAT was fast!
It turns out I don't qualify for any form of disability other than State Temporary Disability. The very nice representative for Federal Disability explained that there are two ways to qualify for "permanent disability" and two forms of it (so that's three kinds total! WHAAA!?!) 

1. You have worked pretty much continuously for pay for the last 10 years. I think that number fluctuates based on your age. For me it was 10 years.
2. You and your partner (if you legally have one) are legally low income (including your assets like car, home, etc.)

Taking a dog "walk" (roll) break

He told us that unfair as it is being in school or a full time parent for the last 10 years doesn't count for anything according to the government. You need to have been paying into the social security system to be able to draw on it in any way before retirement age.

Also your partner working for 10 years doesn't count for anything if you're still together. But their income and assets count against you for the second type. 

I told my husband I don't know why they even call it "Disability" if your disability isn't the first thing they consider? Bottom line, the American government doesn't part with money easily (unless you're a corporate investor in the political system?) It's very messed up.

Overall I'd recommend applying over the phone. Just skip the online process completely. Also call your local office, not their main number. It's much faster to get through. Even if you think you may not qualify it's still worth applying because you never know. Same for temporary disability.

I'm grateful to a friend in my Muscular Dystrophy support group for encouraging me to apply for temporary disability even before I knew I would need it. I was very resistant when he first brought it up, but I did end up needing it and it has been a real life saver.

My puppy was helpful when I got stressed and sad.

So, I'm still unable to work and my benefits will max out soon. That means all the financial burden and pressure is on my husband, which I HATE! It really upsets me to not be able to make any money right now and YES! I feel like even more of a burden, which is an awful feeling.

He tells me all the time that I'm not. And logically my head knows it too. But you can feel much differently about something even if you know the situation is a contradiction. I FEEEEEEEEEEL like a burden period.

Applying for permanent disability

I've been working on applying for permanent disability since November 2019. If you're keeping track, that's just shy of six months. 

At first their algorithm instantly denied me. Then I had 60 days to contest the denial, which I never did. I didn't contest it because I was busy trying to get copies of my chart, medical records and lab results. That took four months. I also felt determined I could do it all by myself. Hahaha!

My Mama bought me this fantastic book (we love Nolo Press) and offered to help. Again and again. Finally I agreed that it would be better to get some help with his daunting process. Especially given my memory issues and the fact that OH YEAH! She used to do this kind of legal stuff for a living when I was young. 

So after two hours on hold we were finally able to find information about making a late contest and filing all over again. Filing over the phone is the option I wish I would have gone with the first time. It's always better to talk to a real person, especially if your case is complex like mine is.

The woman on the phone was great and got me an interview for today. In 90 minutes to be exact. I authorized mom to speak on my behalf and we spent the rest of yesterday tweaking the information I have compiled and readying ourselves for today.

I'm nervous. If I had been working full time for the last 10 years I would be much less so. But I only worked for money the last year. That could be an issue. We'll see!

Wish me luck. I'm sure this will be a long process.

The next big project

One good thing about being home rather than working 40 hours a week is that it has afforded us the time to get some lingering home projects done. So far we've had our leaky kitchen sink replaced, the dry rot facia boards in the front of our house replaced, our front door fixed (complete with door handle that was falling off) and most recently our tub re-calked. My husband proudly installed the shower grab bars himself!

The next project we have up is a big exciting one. We're getting cement work done to form a ramp to our front door. Right now the lip to our front door is 3 inches. Even my six wheel tank of a chair "Dory" can't take that on. We also have a useless flower bed taking up space making the walkway to our door tight for a chair. 

Two lips into the front door.

We like to use our tiny front patio for coffee when the weather is nice and it would be fun to expand that out to make it larger. This would helpfully cut down on some of our garden size and hopefully make it more manageable too. 

Then the driveway will be expanded to better fit both our new wheelchair van and our Kia Soul. We have a useless little weed patch that takes up a good portion that will be cemented over giving us more space. 

Weed patch taking up driveway space.

Not for long weeds!

All those cracks will get patched too.

Thanks California earthquakes.

Here's the wonky flower patch with old bricks. 

You can see the tiny patio too. 

I'm hoping to make ALL of this cement.

Now that we took on the wheelchair van payments I do have to be very careful with our projects. After the cement our last big one will be our fence. It's literally falling down on one side and patched all over on the other. Considering we live between an in-home daycare center and a bunch of college kids (neither were there when we bought our house) a good, tall fence is very important to my mental health. Especially being home as much as I am. Anything we can do to cut down the noise is a medical necessity. Heck! I should be able to write it off on my taxes!!!

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. 

Mixed Feelings

Each time I purchase or receive a new mobility device it comes with some mixed feelings. I'm happy to have something to help me continue adventuring in ways that I just can't do on my own right now. But it's also a bit of a sad reminder to me that my body has gone through a lot and is still struggling.

This morning I pulled the trigger and purchased a Fold and Go electric wheelchair. (I received NO discount or kick back in any way for writing about this chair.) I've had my eye on it since my mobility first became an issue. I like that it can fit in the trunk of any car, can fly with you, only weighs 55lbs, can hold up to 365lbs, can go up a sharp incline, is all-weather and was conceptualized by a woman with RA (who is also President of the company.) It feels like it is designed just for me, not for someone with a serious spinal injury or other need where they are using their chair all the time. This one feels built for travel and adventure. Just what I'm looking for!

My turquoise chair should be here in 2-5 days.

I also got a 6 foot ramp, cup holder and travel bag for it.

My labs did come back with a low thyroid and I'm sure my doctor will increase my Synthroid dose (I'm already taking 115mcg daily and have had Hypothyroidism for 15 years.) I still don't think that's what's behind my muscle issues, but even if it is I read it will take "months for the muscles to regain their strength." But how cool would it be if that's such an easy fix?

Mobility Aide Review

I've had the privilege to be able to try out a lot of different mobility devices this year. Yes, I say "privilege" because they are very expensive, hard to acquire and I know they aren't an option for everyone. Knowing that I thought it might be helpful for you to hear my thoughts on each one, what I find useful and how pricy it is. That way if you can only afford one you can choose the best one for you. So here we go:

#1) Nordic Poles - Price $21-$100

My poles have rubber "walker" tips that can be removed. Under that are metal spike tips that are great for sand, dirt, gravel, etc... I used these poles when my muscle weakness first hit and at the beach. They are wonderful for walking through sand and offer extra stability. Also good for people with minor muscle weakness who just need a little extra. I've used both 1 pole and 2 poles. I preferred 1 for around town use and 2 for any "off road" walking. The plus side with poles is no one gives you a second glance. If you don't like attention with your mobility device, it's a bonus.

#2) Rollator - Price $70-$200

I love "Meg" my rollator. Mine has a seat and I bought it specifically for when I'm out and need to take a break. Seats are hard to find in shops and small towns. It's great just to be able to sit when you're standing in a long line. The down-side of a rollator is it can be hard to push, especially outside over cracks, small rocks, through gravel, etc. Like REALLY hard to push. Really REALLY REALLY hard to push. You get the idea. 

People also do stare a little bit, but not much. If you drop something, expect someone to get it for you. People hold doors open for you, etc... You'll also match the over 70 crowd, but go you for defying stereotypes! I actually had a younger woman tell me she needs one for her RA but was embarrassed to use it. But after seeing me out in mine she's going to buy one. YAY!

#3) Public Electric Shopping Carts - FREE!

Yes, I do consider these a mobility device. Most stores have them available for shoppers. They range between super slow (I'm looking at you Target) to shockingly speedy (Yay Costco!) They make shopping much easier but do come with many drawbacks. One is you're limited to what you can buy based on the size of your basket. Another is other shoppers do NOT consider them to be a mobility device. I think most people just think you're lazy if you use one. Expect others not to get out of your way, to give you judging looks and to just be somewhat jerky in general. Of course that doesn't stand for all people. Just my own experience. 

Another down side is most stores tend to forget about people using them and design their layout so it's very hard to navigate. I bump things and knock things down frequently. I also HATE the "BEEP BEEP BEEP" of backing up, so I try hard not to need to do that. Also they can move so slow that if I forget something on the other side of the store I just tend to let it go. 

#4) Transport Wheelchair - Price $70-$200

My transport chair seen here was around $130. A transport chair is a wheelchair that the person sitting in can't make go. You need someone to push you. They're very light and fold up to fit in any car (just like a walker and a rollator.) The plus side is no walking or muscle use is required for the person in the chair. The down side is they have zero control and are 100% reliant on the person pushing them. Another down is it is hard to go over transition strips, cracks and other minor hazards because of the small wheels. They do best in smooth places like malls, stores and museums. They also aren't comfortable to sit in for a very long period of time. Short term, they're great.

People don't seem to notice it as much as an electric chair. In fact it has been my experience that you become totally invisible in this thing. People will tend to talk to the person pushing you instead of you and will look at them instead of you. It's very odd and totally different then when you're in an electric chair or using a rollator.

#5) Compact, Folding, Electric Wheelchair - Price $2,000 - $5,000

The Fold and Go chair you see here is priced at $2,795. These wheelchairs are typically designed for travel. They are light (around 50-100lbs) and can fit into the trunk of any standard car. I don't own one yet, but this is next on my purchase list. 

These chairs appeal to me because of what I just mentioned, but they're also more comfortable than a transport chair if you're out all day and the person in the chair can control where they're going. That means way more independence. You also aren't reliant on a caregiver, so you can use it when solo. IF you can get it in and out of the car alone. Some insurance companies cover these chairs, but mine does not. Bummer. 

#6) Traditional Electric Wheelchair - Price $5,000 - $30,000

This is a picture of my chair and the receipt states it was $16,000. Luckily for me, my insurance company agreed it was needed and covered the cost for me. The up-side of this kind of chair is it is very comfortable, I have complete control and don't need help to use it, it is heavy duty and able to go all day, it has 6 wheels and feels very stable, it has strong shocks and doesn't hurt going over doorways, cracks, rocks, bumps, etc...

The down side of this chair (other than cost) is size and weight. It weighs just under 300lbs and is too heavy for my Kia Soul. That means I either am relying on public transportation, or I have to get a new car to use it. Luckily I happen to live very close to our downtown and can get around locally without driving. BUT that hugely limits where I can use it. Which is why my next purchase will be a Fold and Go. The other down side is it took me 3 months to get this chair through my insurance. I think that was actually very fast. Like a car there's also maintenance that the chair requires annually. 

People WILL stare, look, nod, gaze and in general notice when you use this big beast. But as my husband said "I've never seen people be so... nice!" It's true. Everyone will be nice to you, stop for you, hold doors for you, let you pet their dog, etc. VERY different experience than the poles or an electric shopping cart. If you're into psychology it will be a fascinating experience for you. You also are up a bit higher than the transport chair (which is exactly butt level.) So if having everyone's butts in your face holds no appeal, this chair is a major improvement. 

As my muscle weakness has progressed so have my tools that I use. Also as I go through the day my muscles gas out and I need more and more support. So yesterday I went from walking to using my rollator to using my transport chair at the last 2 stores we visited. At times like that I really miss my electric chair. I really don't like the transport chair, but need to listen to my body. I'm looking forward to having an electric chair that will fit in my car and I can use out and about when not in our town.

Hope this little run-down helped you!