I Made It to 50!

I've been 50 years old for less than a month now. I have some thoughts about it to share. Firstly I feel incredibly lucky to have made it to 50. I will never understand people who get depressed about aging. Quite the contrary. I feel incredibly fortunate and grateful to have lived as long as I have. 50 Feels like a big gift.

Also... Much of my life keeps getting better the older I am.

My 20's were entirely devoted to being the best mother I could be. My 30's were about my marriage and working on our relationship. Communication and lots of therapy. My 40's were completely about being in school to build my dream career. Then illness struck.

What will my 50's hold?

I have no idea. But I'm excited to see.

Hair One Day, Gone the Next

I have always been a chameleon with my hair. Ever since I first bought my bottle of Sun In and bleached it to a bright orange as a young tween. I treated my hair like another accessory. Like Jewelry. I had fun mixing it up. Short, not so short. Red, black, natural. Bob, pixie... 

But don't take my word for it. Here's some head shots from the last four years.

Box dye brown

No dye bed head

Shaved off post brain surgery head
(I did it myself)

Sweet henna head

Wonder Woman black, longer (for me) hair

Irish red hair

Up, down, head scarf, hair clips. I loved to play around with my hair. 

I haven't colored my hair in over a year now. I miss it sometimes. Just the fun of changing things up if I want. But I don't miss the mess, cost or smell. I also don't think I could do it now.

The way my muscle disease works for me, reaching over my head while sitting or standing is the hardest thing I can do. So shampooing, blow drying, all of those motions cause me a lot of pain. My arms fatigue very fast.

I wanted to grow my hair out again, but the styling involved with long hair has just become impossible for me. I can shampoo and do a quick blow dry, but that's it. Forget all the products and cute styling. Flat irons, curling irons, hair clips, bobby pins. It's all out for me. 

Instead of all those distractions I'm trying to embrace what's important in life. To stay focused on the things that really matter. My hair does not matter. As my husband says, "You're beautiful and sexy no matter what!" Having it short and natural saves me loads of energy, which is the most important thing.

My Time

Most people think that being disabled means I sit around, sleep and watch TV all day. They're confused about what I do. When I'm not scheduling, attending or following up on medical appointments and procedures (which really is a full time job in itself), here's where you'll find me. 

At my mom's pool. We work out together HARD three days a week for an hour. We swim and then have extensive routines that we do with our water weights. No way could I have done this last summer. It feels amazing to have so much energy to be able to push myself and build muscle strength in this way.

On days where I don't swim I try to walk as much as I can. I'm up to walking a quarter mile on my own with just my cane now. That's an enormous accomplishment and something I haven't been able to do since before I became ill.

When I'm not pushing myself to walk you'll see me out in my community in my wheelchair. I go to the Farmer's Market, alone to the store and for haircuts when I can, to museums, gardens and plays. My mother took this picture of me when we attended an outdoor play recently. We had a great time. 

I love to spend time in nature and take our dog out for "adventures." Here I am in my favorite oak grove with my favorite tree. The path is compact dirt, so my chair can maneuver quite well. We've been enjoying the weather before the super hot days come.

I also spend a lot of time and energy in my garden. We are currently growing tomatoes, peppers, basil and squash. However we also have trees, flowers and plants that need caring for. And don't forget the passion fruit vine! We were very excited about our first flower ever.

I have an incredibly full and satisfying life that has nothing to do with my disability. I feel very fortunate indeed to have so many outlets and such a big life. 

What Comes Next?

Almost a month has gone by since my last post. Many things have changed and much has stayed the same.

I passed my licensure and am now a fully certified Psychotherapist. That's very exciting news. I passed on my first try despite the heat, a mask and a migraine. I felt and still feel a huge tidal wave of pride at that accomplishment. It also marks with a big period an enormous part of my life. Endless schooling, three degrees, 3,000 hours of practice, studying for millions of hours and now a framed certificate on my wall publicly declaring that "I DID IT!" 

What comes next?

That's the part that has changed very little.

I still can't function at all without my Botox shots for migraine every 3 months. Though by the end of month 2 it starts to wear off and then I'm a mess once more. Dizziness increases, pain, sound and light sensitivity, seeing things that aren't there, my memory gets even worse (which is really saying something!) You get the general idea.

Then there's the pain. The pain in my body is constant. I rarely take anything for it because I feel pain is the communicator. Sometimes that communicator is broken (like my migraines). But sometimes it's a valid message. I don't want to shut down that relay with my body just yet. 

But the number one ruler of my life is fatigue. When I become exhausted all systems stop. My memory, focus, ability to talk easily, train of thought, muscle strength, all go out the window. This happens daily, usually around 12-3PM. I rest and sleep and feel better when I get up. If I don't rest and sleep it gets worse till my muscles start to shake and spasm and I get cold sweats. 

When people say to me "Now that you have your license you can start seeing clients again!" I cringe. They have no concept of what goes on in my body. In their defense I also "fake normal" really well. "You can just see a few online" the friendly person might say. But that involves the ability to be there for the person 100% and many hours of record keeping, preparation, etc... I'm not just a face on a monitor. 

Therapy is out. 

So what comes next?

I'm essentially taking some time off to mull that over. I'm vaccinated and enjoying being social a little bit again. I'm looking forward to taking a few small road trips. You know... cutting myself a break!

For the future I'm considering a few ideas. Writing a mental health book is the first thing that comes to mind. Both an interventions book for clinicians and one for consumers. I like the idea of writing because I can do it anytime I feel up to it.

Right now I'm swimming often at my mother's pool. Trying to work out my CPAP machine. Attending appointments at my muscle clinic, my migraine neurologist and my regular doctor. Spending time gardening (when my body allows it), cooking (see previous comment) and hanging out with my ever-fun family.

We'll see what comes next.

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

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. 

Inner Pixie

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.)

Life Hacks

Today I tried out some helping hand hacks that I've been reading about. I stopped by our local "dollar store" and picked up these small rubber bands and foam curlers to turn into grip aides.

I removed all the plastic and bagged them up.

Some of the blue foam I cut smaller and put in my purse. The pink ones are already a good length. I thought it would be good to have on-hand in case restaurant silverware is small and sharp (already something I've encountered.) Now they're all bagged up and ready to use.

Curious what I'm going to do with those tiny rubber bands?

I read about putting them on lids that are harder to open (like nail polish bottles.)

It really is a helpful hack! It makes them much easier to open. It was a bit tricky to get them on though. I think a lot of people may need someone to do this for them. I found it so helpful that I decided to put it on my most used "slick" cosmetics.

You can see I used quite a few on each. 

As for the foam rollers I put one on my favorite pen and toothbrush. The holes were too small for my toothbrush, so I cut it down the middle and slipped it on. It didn't work very well. I think for fatter handles it would be better to buy special arthritis grips.

Everything on rollers is WONDERFUL!

Another modification I've made is getting as many things as I can on rollers. Pushing and pulling is much easier than lifting and carrying. It's also easier on my hands. I adore my wheeling clothing hampers. I realized after my swim at the gym that a regular gym bag no longer does it for me. It's way too heavy when it's full of wet things. Enter the $29 roller bag.

Making modifications, changes and hacks has been hard actually. I keep feeling like "I don't need any of this YET!" But I noticed when I do use a tool or change things it feels so much better... than I have a little "oh" moment. I remind myself that I don't have to struggle unnecessarily. I can make changes that make things easier. 

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!