We've Got This

"In sickness and in health..."
My husband and I didn't include any traditional wedding vows in our ceremony 31 years ago. Luckily we both love each other enough to stick it out no matter what comes our way. Myopathy, brain tumor, TB, Diabetes, Liver Disease, Diverticulitis, COVID, a Regime in the US. I could keep going but you get the picture. 

 

My guy eats peanut butter as much as these squirrels love peanuts.

My man has been having some health scares lately. He's been pretty borderline diabetic for the last eight years. But this past year it was severe enough that he had to start medication for it and seriously avoid alcohol and carbs. He wasn't a big drinker before anyway, so we thought it wasn't too serious.

Then recently his liver enzyme blood work came back very high. He had an ultrasound that led to a diagnosis of fatty liver. We were both confused. He hadn't been drinking, he cut out almost all carbs and only ate white meat. What's going on? His doctor then ordered a different kind of scan and lab repeat. The scan showed that he has "severe fibrosis" in his liver. Which is one step down from cirrhosis.  

Everyone's body is different. He's also under a lot of stress and pressure with his work. And who isn't stressed out right now in America? I'm thinking that like me, he just had a strong reaction to something. Likely a combination of diet and environment. Fortunately also like me he is a "take action" kind of person, not a "wallower."  

Everything we are planning on doing to help his liver and diabetes is also good for me and my body. So it's really a win-win as long as we're serious and stick to the eating plan.

We both found this list helpful. 

He's now cut out all dairy and sugar. Going easy on fruits and heavy on veg. 

To help us out I subscribed us to a new meal delivery system. It delivers fresh made, organic, Vegan meals to our house weekly. Since I have a problem with portion control and getting enough protein in my diet I'm hoping this will be helpful.

So far I've tried out:

• Hungry Root- It had too much prep required and too much packaging.
• Misfit Market- Expensive, but I liked it. Especially their jalapeno hummus. 
• Thistle- My first delivery is Wednesday. It's also expensive, but all the shopping, meal planning and assembly is done for me. That will be helpful as my energy levels aren't great at night.

I'm also re-joining the gym this week so my energy at night will likely be even worse for a little bit. Having ready made healthy meals that fit both our needs will be a real luxury.  

Me living my best life in 2024

My mom and I are committed to going to the gym three days a week together. I'll start in the pool and slowly (hopefully) work my way up to Yoga class again. I got a lot out of both when we were regularly going.

Meanwhile my husband has been walking a lot more. He loves this mid 70's spring weather ((gag)) and the sunshine is good for his mental health. I'm less of a sunshine warm weather lover, so the indoor pool will be perfect for me.

My weight is currently at a good place and even though I'm just recovering from bronchitis and pink eye, I'm feeling pretty good. I'm hoping we can reverse my husband's liver condition. No way can he go before me!
 

(NOTE: I got nothing for linking to those food delivery companies. All my own opinion. No kickbacks.) 

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.

Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

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.

Chronic Illness & Relationships

Life gives us many opportunities for relationships. Acquaintances, co-workers, friends, family, pets... All touch us in some way. Chronic illness and relationships are rough.

Can't you just bring a coffee by my place every once in a while?

Once I didn't "get well soon" most of my friendships went by the wayside. If I'm really honest I would say ALL of my friendships went by the wayside. You can only cancel plans for being ill so many times before people just stop asking. And I think my friends specifically just stopped knowing what to say or do when I wasn't "cured" by whatever treatment I was trying that week.




I have a specific friend who was pretty shocked when I showed up to our coffee date in a wheelchair. And if I had the energy to sit and listen to people talk about themselves for hours then I'd still be at work. I don't blame them for dropping off. It's very hard to understand and to know what to do to help. And "let me know if I can help" isn't really help at all. It's words to make the person NOT feel helpless, useless and powerless in a situation where everyone is powerless.

My in-laws have been really fantastic. My mother and father in-law took my husband and myself to Yosemite National Park not too long ago and bent over backward to do things that would be accommodating for me. They check in on me regularly and are good listeners.

Us on an accessible trail at Yosemite in July 2019

My two sisters-in-law are also very helpful. They always understand if we need to cancel an outing or family gathering because of my health. No one takes anything personally, which is a HUGE gift.

One of my sisters-in-law visiting me right after my brain surgery. They were both there and both spent the whole day with my husband waiting. Now THAT'S LOVE!

My family is also great. My mother is looking at a house close by to me to be helpful. She now drives me anywhere I need to go, anytime. She even takes my precious dog out for walks and adventures! She feeds me, henna's my hair for me and slips my son money any time she can.

Me and my Mom. I feel very loved and supported with her.

My husband is the center of my support system and where I get the most love, understanding and help. He gets to see me at my worst and has never even blinked when I lose my cool and have a "snot" moment of hysterical crying. He rubs my feet anytime I need it, rubs my back nightly and reads me stories out loud. He works more than full time to support us and is calm, cool and patient with our 25yo son (who is temporarily back home again). My husband cooks, shops and cleans... he's an amazing man. I may have bad luck when it comes to health, but I won the karma jackpot with my marriage. 

He always has my back

My chronic illness has tried to take out my marriage many times, but it hasn't even made a dent. "Can't work, no orgasm, need to rest daily, foggy mind, can't drive..." a world of "cant's" doesn't stop our love for each other and how we always find a work around.

I know people who have had chronic illness decimate every relationship in their lives. I have much to be thankful/grateful for when it comes to the people who are really there for me every day and I feel fortunate to have them. 

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

Rest and Play

Last week my husband and I celebrated our 25th wedding anniversary. Although we call ourselves the "Adventure Buddies" we were more than ready for some serious rest. We drove three hours from our home to the coast for some fresh air, good food and plenty of relaxation.

I fell in love with this swing on our patio, even though it made me a little dizzy. I think I need one at home now.

The hotel we stayed at, the Bernardus Lodge and Spa, had a beautiful garden, delicious restaurant and was completely wheelchair accessible. It was just what my body and soul needed.

I'm learning how to have "relaxing adventure" lately. Case in point, the hotel had a convertible car that we were able to "borrow" for a lovely coastal drive. It was a lot of fun, but an easier adventure on my body than say, a long beach walk, which is something we would have done instead in the past. 

Some "adventure" takes money, but other things I can find for free. Like this fun, organic farm stand we stumbled upon on our way home. They had a cute area for "kids" that I took full advantage of. I spent my muscle spoons for the afternoon getting in and out of this GIANT adirondack chair and it was totally worth it. I felt like such a kid!

For me play is just as important as rest. If I spend too much time just "adulting" I'm one unhappy lady. 

Of course one of my favorite ways to rest and re-charge is to snuggle with my sweet girl. 

My husband and I also "play" with (gasp) our friends! We belong to a local group of tiki lovers who are as child-like and playful as we are. We try to make time at least once a month to dress up and hang out with our buddies. 

Life is a balance and I'm still trying my best to find the perfect mix of work, rest and play. 

(** I received no reimbursement for my mention of Bernardus Lodge and Spa. But if they'd like to hook me up in the future, that would be dandy!)

Sex and Progressive Disability

It seems as if every article and blog on the internet that addresses sex and disability does so from the point of view that the person has always been the way that they are. I have found hardly any information in my scouring that talks about what happens when you have a progressive disability or illness. Which is very sad because it has a HUGE impact on your sex life.

My neurologist told me last week that my issue (COQ6 gene mutation that causes COQ10 deficiency that causes Metabolic Myopathy) is progressive and degenerative. It was something I suspected but it was still hard to hear. Although it did light a fire under my butt (pun intended) to try and find something that would help my sex life.

My husband is amazing and is always open to trying anything that might help me, even if it costs us money. I've tried a vibrator in the past, but I don't think it was strong enough for my muscles. We also have a "wedge pillow" that is amazing. I can't speak highly enough of support pillows with any kind of muscle condition and intimacy. So although I still was enjoying sex, I had been unable to have an orgasm for a long time.

One of my issues is muscle cramps and spasms that happen most of the time. My neurologist recommended I try CBD for it and said it would help. A friend of mine from my Muscular Dystrophy support group suggested I try a tincture. One trip to our local dispensary (it's legal in my State) and $80 later and I was equipped with something that has been helping me. I thought it might also just help my orgasms?

My husband and I made a trip out to a very female forward sex store called Good Vibrations. They helped me find a new vibrator that could be helpful, along with some other muscle support devices to try out. BINGO!!! A stronger, more adjustable, larger vibrator did the trick. My orgasm has changed a lot though and felt very different. But I was still happy to get there.

NEVER GIVE UP! My tenacity paid off once more. Don't be afraid to experiment and invest some money on your sexual pleasure. It's important and helpful for your mood.

(I'm not affiliated with any of the links and received no compensation for sharing them.)

Friends are a Necessity

I am very much an introvert. I don't like big groups of people, lots of noise or parties. I like close friends I can trust and having fun in small groups (or better yet with one or two people.) BUT I also know that humans are social animals and that sometimes nothing is healthier for you than to spend time in a group. I've also been struggling with depression lately and craving a community of others who have similar physical and health issues.

I was fortunate to be directed to a Muscular Dystrophy "Mixed Diagnosis Group" in my area that meets monthly. My husband and I went to our first meeting in May.

At the group I saw people of all ages and all abilities and all but one were using a power mobility aide. It was so refreshing to be in a room full of people who shared the challenge of mobility together. Even though I had just met all these people I felt a sense of community with them. 

I'm not that great at holding onto friends. My husband has friends who have been in his life since grade school. I on the other hand seem to go through friends like ice cream. Enjoy them when we're together but don't really miss them that much when we part. Honestly most of the time I feel like I only really have the energy for my marriage, my job, my son and my dogs (and even then some days not enough for those things.) To add another relationship on top of those already precious to me feels about as realistic as me climbing Mt. Kilimanjaro. Aka: not at all.

But checking in once a month? I can do that. Meeting up with our friends once a month or so for dinner and drinks? I can do that. Not only can I do that, but I find it meaningful and fulfilling. I enjoy other people in my life and it helps me get out of my head and body when I do engage with others. Which in turn is good for my health. So yeah... it's worth the spoons. 

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

A Spoonful of Hope

Spoons come and they go. They are coveted and fleeting. I never have as many as I wish I had and I struggle to use what I do have in a way that enriches myself and those I love. I ask myself all the time now "does this matter? Is it important? If I can't answer "YES!" Then I really can't afford to spend a spoon on it. Sometimes even if it is important, I just don't have any spoons left.

This weekend was very full. It was my sister-in-law's 50th birthday party and Father's Day. I knew it was going to be busy, full and stacked high with importance. I tried my best to rest up and plan my spoons as best I could. But the tricky thing about chronic illness is that spoons don't work that way. You can't stockpile them and save them for really important moments. Even though I try.

Spoons are like most things in nature. Fleeting and unpredictable. Saturday was good. I tried to not "over do it" at the party so that I'd have "plenty of spoons left for Father's Day." Forgetting that it doesn't always work that way. So Sunday came and I was wiped. Not enough spoons to celebrate it "the way I thought it should be. The way I really wanted it to be. The way I thought my husband deserved." Of course this all led to me feeling "not good enough, frustrated, upset" and even more exhausted today (despite my wonderful man literally taking me home and sticking me in pajamas after I just couldn't be out anymore.)

Despite my best efforts I let "should" take over my "can." I stubbornly refused to listen to my body till I was on the verge of tears. And when I felt like I was "ruining my husband's day" he just gently assured me that I did no such thing and that he was very glad that I told him I had to go home and couldn't be out anymore.

Nature teaches me to listen and watch. To have awe for the things I can do and patience for the things I can't do. To savor moments as they pass because (like spoons) anything worth treasuring will for sure be temporary. After all, everything is temporary. 

Even though I'm exhausted today, I'm hopeful. My doctor got me a new rheumatologist and I'm seeing him a month. This is the first time a specialist got me in to see them in less than 3 months. I'm grateful to be expedited. 

My upcoming "tour of immunology" looks like this:

This Thursday = full spine and neck MRI (it also happens to be Summer Solstice)

June 27th = new neurologist for my neuropathy

June 29th = my 3rd physical therapy appointment

July 13th = back to my primary care doctor for a check in

July 19th = first appointment with my new rheumatologist

When my physical health is compromised it's easy for my mental health to try and follow. A helpful trick is to list 3 things that I'm grateful for each day. So here's my 3 things for today:

1) My husband, his support and love. He helps me take care of myself and makes me smile.

2) My dogs. My little one always know when I need some rest and she loves joining me in bed.

3) "I Love Lucy" - one of my favorite shows. Laughter is great medicine.

(And one to grow on: That I have health insurance! Always grateful for that.)

Modification

I am blessed.
Not because I have a nasty chronic illness.
But because I have the means and live in a place and time where I can access items to make my life easier and reduce pain. I'm very aware that not everyone is so fortunate, so resourced or so supported. This makes me incredibly lucky.

As I get to know what I can easily do and what's more challenging for me I also learn what's worth the spoons and what isn't. Some things I can still do fine, but they cost so much in energy and muscle strain that it's just not worth it.

Here are a few things I found (all on Amazon - no affiliation) that have been making my life much easier. I'm not giving links to each thing because that's a hassle. Yes, I paid full price and wasn't compensated at all. But they've helped me.

This has helped the most. It's a UV sun parasol that's super compact. It has much better coverage that a hat and shirt and is light and easy to cary. It was less than $20 and it is the single most useful thing I've bought. If you're on a medication that causes sun sensitivity or sun reaction I 100% urge you to get one. I need to get another one so I can leave one in my car at all times.

This stainless steel mini chef knife has also been fantastic. My hand would hurt for hours after using our nice knives. This one has a rubber grip that has a bit of give so the impact doesn't go straight to your hand. The shape is very useful and the smaller size makes it perfect for things I regularly chop like onions. It's my favorite kitchen tool now.

Handles on cups are also a big deal now. They help me keep a grip on my glass and keep my hand from getting too hot or cold. Something you have to watch with both RA and Raynauds. My favorite coffee travel mug with a handle recently broke (not my fault.) So I bought this one. It's ceramic instead of plastic and I love the wooden handle. It fits great in my hand.

Click on the picture to go to the Etsy store

I'd been sneaking some thick cardboard cup cozies from our local grocery store and keeping them in my purse. These are wonderful for when you're eating out in a restaurant. They keep your hands from getting too cold and improve your grip on the glass. Though I also recommend using a straw, especially if you're on an immunosuppressant. 

But to put the paper ones on I still had to lift the cup up. I was looking for some fabric velcro ones that I could just un-do and re-attach once secure. I found this fantastic Etsy shop with hand made cup coozies in all kinds of fun fabrics. Now I have 2 in my purse and 3 for home. 

Ok... this one seems stupid. But I really love fresh ground pepper! I also love my "choose the size of your grind" hand pepper grinder. But that's exactly the kind of motion I'm supposed to avoid with RA. So I found these electric grinders that also have a "choose your grind" setting. I haven't used them yet because each one takes 6 AAA batteries (and who has that many just laying around!?) Next time I hit Costco I'll get a pack. But I'm so excited to have them and can't wait to get back to fresh pepper on my salad. If you don't indulge in this, you're really missing out.

I now own two of these amazing baskets. One of delicates and one for panties and such. No more toting heavy baskets out to my garage. Now I just wheel dirty stuff out and clean stuff back in. 

The biggest modification to my life however hasn't been in what I've bought. Its been an adjustment to how much I do and in letting my husband help me. He does almost all of the driving now. Not that I can't but he doesn't mind and it saves my energy. I tend to wait in the car for super fast errands like hitting the ATM. I let him get me gas when he can. It saves me touching the dirty screen and pump. All these little things can add up to a lot of energy and hand use. He's wonderful and doesn't mind picking up the slack. I do what I can like cleaning the kitchen counters (it doesn't require bending or pulling.) 

It hasn't been easy for me to learn to ask for help or to rely on him for more things. I'm very independent. My Nana tells stories of me being very little and refusing the help of others with a defiant "I can do it myself!" That instinct is still strong. But my husband told me a long time ago that "Just because you CAN do something, doesn't mean you should have to." That has stuck with me. I'm very blessed to have his support and help and now I don't hesitate to ask for it when I need it.