A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

I'm a Walking Miracle

Sometimes I get so caught up in the day-to-day of things that I forget what a miracle I am. To be walking my dogs, making plans for a vacation, camping with friends... all of these things are joyous moments that I thought were no longer in my future.

The little things too. Doing laundry, making my bed, going food shopping, riding my bike. Nothing I would have been doing this time last year. 

I feel like the most fortunate woman alive. To be able to be in my body, in my life, full-on once more. 

Both of these pictures mean a lot to me. I'm doing things I hadn't done for years. Walked on the beach and climbed stairs. Both are momentous occasions for me.

I take nothing for granted and am thankful for each day that I have my mobility. 

From six wheels to two

Eight months ago I was using six wheels. My beautiful Permobil pink wheelchair and I owned the streets. She got me from A to B in style and speed. Topping out at 7mph she was ahead of her class. Now she is parked in my garage, lovingly draped in my favorite shower curtain (occasionally holding laundry for me to pay attention to.)

I love this picture my mom took of me last year.

I now have two wheels. My stunning new Lectric bike tops out at 20mph. I've only taken her 15 because I'm a big scaredy cat. Even though I always wear a helmet.

Shopping online, but I bought her in person at a REAL brick and mortar store.

My first day out.

I wanted an electric bike since I became mobile again. I originally thought I would get a three wheel trike. It turns out when I went to test ride them I hated it. I felt much less unstable on three wheels then I did on two. Maybe it's because I used to be a recreational bike rider, so it is what I was used to? It's amazing how muscle memory really works. 

Test rides were important for me.
My first time on her!

I feel so fortunate to be able to ride a bike again. My bike not only helps you pedal as much as you need, but you can also ride it like a moped with just the throttle engaged. So if I ride it somewhere and get too tired I can just sit there and cruise.

I feel like I'm 10 again when I get on it. So free. My next purchase will be a rainbow pinwheel for my handlebars. Don't be surprised if you hear me zoom past you house yelling "Wheeeeeee!!!"

Dear Diary Dump Day

Dear Diary,

This year is almost a quarter over. How can that be? I haven't written in a while. Here's what I've been up to.

• Margo is officially done with all of her medical treatments. Yesterday I wrote the check and filled out all the adoption papers. Yay! Now I'm the "proud dog mom" of two dogs.
  
  
  
  
  
• Pablo was sold. There is now a huge empty spot in our driveway. The driveway we had built just to accommodate our wheelchair van. We're a single car family now.
  
  
• As much as I loved my massive gym, it was just too far away from my house. Going there, working out, showering, changing and coming home took most of a whole day. So I recently joined a different gym much closer. I don't like it quite as much, but it does have a pool, yoga and zumba. That's all I need.
  
  
  
  
  
• John and I decided that this October to celebrate our 30th wedding anniversary we're going tooooooooo (drum roll please) MAUI! I love Hawaii so much and can't wait to go back.
  
  
• I'm still fat. Chubby. Chunky. My eating disorder is alive, well and thriving. This is by far the hardest thing I've ever done. Trying to stay on course, manage my portion sizes and what I eat is proving to be my Darth Vader mega boss battle. But each meal I try again. It's also a struggle not to fixate on it or kick myself for eating something unhealthy.
  
  
• I'm sick of gardening. I wish I could sell our house and buy a condo where all I had was a tiny patio and space for the dogs to wee and poo in. I'm serious. I think subconsciously I equate it with my illness? I'm not sure exactly every reason why, just that I'm over it.
  
  
  
  
  
• I'm enjoying photography and ceramics. I would do both every day if I could.
  

Well, that's about all for now. Remember to be gentle and kind to yourself.

Adios Pablo!

Some big news here this week. We've sold Pablo (my wheelchair van.) At first I tried to sell it privately, but what worked out best for us was just to sell it back to the company we bought it from in the first place.

It's still in our possession, but won't be soon. WOW! That's a very big deal. 

We've had Pablo for four years. We bought it just before the pandemic hit in January 2020. He was incredibly expensive. It's insane how much mobility tools are when you have to pay for them yourself. There are many programs to help families of disabled children, but not many for adults.

I'm relieved and ready to say "adios" to my good friend. Having it there in my driveway is a constant reminder of all the things I couldn't do and my reliance on others. Even though I occasionally drive it now. It's also expensive to maintain. It's not being used for its intended purpose. I'd rather pass it on to someone who can REALLY use it.

We have another car. A Kia Soul that has been a fantastic friend. Then my mother has a large Jeep Grand Cherokee. For now we're not looking to buy a second car. I am however on the hunt for a new bicycle! 

Best Christmas Yet

Oh boy! Do I ever have a lot to be thankful for this year. I feel like every wishbone, birthday candle and dandelion I've found over the last five years have paid off. And now it is the holiday season. My first one as a re-abled person. The first one I can stay awake all through in five years. You bet your sweet ass that I'm "walking in a winter wonderland." Or almost... it's still 80* outside where I live.

Holiday shopping excitement!

I've already warned my husband that Christmas is going to be a very big deal at our house this year. I'm putting up every string of lights we own, crafting till my fingers blister from my hot glue gun and kissing every creature I encounter under the mistletoe. I already bought seven Christmas trees. Ok... it's not what you think. They're all very small. But still! I'm one jolly lady over here!

O' Christmas Tree O' Christmas Tree...

We'll be having our first Thanksgiving feast this Saturday. For some of our friends it will be the first time they've seen me up and walking in five years. Everyone I know has been using the word "miracle" - myself included. So what better time to celebrate than the winter holidays? I'm going to shine brighter than the brightest Christmas lights this year with joy.

Meet Evangeline!

Introducing my newest wheelchair "Evangeline!" She and I have gotten off to a rocky start. She was given to me (thank you health insurance) the week of Christmas 2022. I've had her six months, but she and I are only just now getting along.

What happened?

I'll tell you all about it.

See... she is FANCY. I was intimidated the second I sat on her. She can move in any and all directions from zero gravity to six feet in the air. Working her controls feels like you're working a forklift. She's very complex.

She also doesn't like rough terrain. She likes smooth, even pavement. No grass, dirt, mulch, rocks, tips or anything other than flat and hard. Honestly I think she was made for Las Vegas or shopping. She's not an adventure girl. She's your Jimmy Chu shoes.

Then there was the error code.

Any time I tried to use her lift or tilt features I would get a flashing error code. I have had her serviced five times already and a part replaced once. Another part is on the way to be replaced as I type. She's a finicky Swede. Yes. She's made in Sweden. 

It's like a car. The more complicated it is the more that can go wrong.

Then there was the incident that happened on vacation.

I thought I could roll down a very steep, slightly slanted driveway and be ok. I was not ok. Evangeline locked her tires and I slid down the driveway and into the street. Luckily there were no cars at the time, but I did throw off a touring group of bikers and made one tip over. She doesn't like uneven surfaces. FLAT! FLAT GROUND ONLY!

My repair guy said "yeah. There's no way you were going to make that. Maybe next time circle back and avoid doing that." Thanks dude. Super helpful.

So she and I have had a challenging relationship.

However...

She's also really amazing. And pretty. And comfortable. She can adjust to me in any way. And I love the lift function (when it works). I always get comments and questions. Most people haven't seen a chair that could lift up as it's still a pretty new feature.

I just had to learn to get comfortable driving her and she had to be adjusted quite a bit to fit my needs. I think we're almost there. And I always have Dory for adventures.

Bright Side

I was thinking the other day about all the things I do now that I wouldn't be able to do if I were working full time. I came up with quite a comprehensive list. I found it incredibly helpful for my mental health to do this. I still miss working and all that came with it. The identity, the respect, contributing financially to my family, helping my community in a meaningful way...

It's one thing to have my family tell me how helpful and useful I am even though I can't work right now. But it's completely different to work through those feelings on my own.

Now I have time to:

• Fight for my medical supplies (my wheelchair, CPAP machine, etc.) This always takes a ton of time and was incredibly hard to do while working full time.
• Attend needed medical appointments and therapies.
• Spend more time in nature. 
  
  
  
• Create things and express my creative side. 
  
• Process the loss of my partial mobility. Mentally and emotionally.
• Be there to help my son. 
• Spend time getting to know my mother and who she is right now.
• Investing time and spoons into our home and garden. 
  
• Spend more time with my puppy and enjoy her last days with her. 
  
• Be available 100% for my husband. Hearing about his work and being more a part of his day.
• Being able to invest more time on my body and health. 
  
  
  

(Not a) Damsel in Distress

"I'm a damsel, I'm in distress, I can handle this."

-Meg (Disney's Hercules)

Something happened yesterday that was a new experience. My wheelchair broke on me. I should clarify that my wheelchair broke on me while I was ass high up in the air. You see... I was trying out the tilt feature on my chair as I've only used it for little tilts, not mega tilts and I wanted to see how far it would go. I felt like I stopped it even before the max limit. I laughed with my mom as I laid there, until I realized I was really stuck.

My mind quickly went into problem solving mode. I'm the girl you want with you in an emergency. I realized I couldn't do anything about the situation laying on my back like that. So I asked my mom to help me get out by removing the side arm and letting me brace myself on her arm. Fortunately I have legs that go on for miles, so I was able to very carefully shift to the side and wiggle my way down. I was up very high, so I was ultra careful. I moved gingerly to keep my center of gravity in the middle of the chair as it could very easily tip over.

Like a wounded ninja I slunk out of my beloved Dory and made it safely to the ground. Step one was complete. I knew it was some kind of mechanical error because the control panel would switch on, but just stay on the home screen. I had no control over it and could only switch it off and on. My first thought was to try and reboot the electronics, but I had no idea how to do that. I started looking for some kind of button, or way to unplug it from the battery. 

Failing both of those I knew I had to call my wheelchair company. My dead phone disagreed with that decision. Mom to the rescue again! Thank God I wasn't alone. I would have just been laying there calling for help. And thank goodness I still had some mobility. I don't relish being rescued by the fire department. 

First I called the main number, then I was transferred to my local servicer, then to the voice mail of my "service manager." Not to be waylaid I called the local number again and this time I reached her. Then I was transferred to the main corporate service department for tech help. The "expert" had us install an app so he could see the "problem" via live video. Now I was hoping for some actual help! Uhhhh... no. The guy told us about the "secret button" to restart it, but it didn't work. (But now I know where it is.) As I was on another long hold I was examining Dory and seeing what could have gone wrong. Then I saw it.

Right in front of me I saw the hinge that rotates when the chair tips back. Pinched in that hinge was the small, black power cable that connects to my control box. The cable was pulled tight and right away I knew what happened. The cable became caught in that hinge when I was tilting back and the more I tipped the tighter it was pulled. EUREKA! But when the tech got back on the line he sounded dubious and doubtful. He put me on hold again. My mother and I figured out a way that we could create a little slack on the cable by lowering the arm rest and turning the control box to the side. It worked! We had enough slack on the cable that it came out of the hinge.

I tried turning the chair back on and nothing happened. I turned it back off and rubbled the cable a little where it was pinched. I think we all deserve a nice rub after a traumatic experience. Well, I must have magic hands just like my husband because Dory turned right on and I had controls back. "Mr. No Help" came back on the line and I explained what just happened. He acted like that was the end of the call. I told him directly that I would be needing a service visit and a new cable because this one was obviously now compromised. "Oh... Ok" was all he said. (Jesus give me strength!)

So with zero help from my wheelchair company I discovered the problem and fixed my chair myself. Jeeeeeeeze. I won't bore you with more details of what happened this morning when it looked like Dory wasn't charging, but suffice to say that I'm getting a loner chair delivered in 3 days while a new controller with cable is being ordered.

I felt horrible for people with no mobility who really would have been stranded. And why had my 60K chair not worked 100% right the first time I used tilt? I JUST had work done on it. It should have been tip-top. And what about people who aren't skilled at getting what they need over other phone? Or who just don't have the energy to be persistent? Or who don't have a strong Mama with a full phone right there? Or who can't afford a 60K chair to have it break down on them in the first place?

Disability is hard enough not to add cruddy companies on top of it. I shouldn't have had to find the problem and fix it myself. They should have not screwed up when putting my chair together so it would happen in the first place. 

People have an emergency number to call if their car breaks down, so why not an even more important mobility device? Why aren't they insured by the companies who provide them (at an insane cost I might add.) 

The more I live my life as a disabled woman, the angrier I get at our broken system. At people parking in the disabled van spot. At the lack of affordable equipment for people who need it. At the crazy long waits to get anything done on repairs. At the total lack of any oversight and quality control. At the lack of accessibility and representation I see everywhere. I wish I had more spoons to actively fight these injustices. 

My mobility history

My electric wheelchair "Dory" just had her latest round of updates. She got a new battery, new battery cables, new smaller seat pan and a new cushion. During the update before that they installed the equipment needed to make her tilt on command, installed leg abductors (to help keep my knees together) and a taller headrest. As my needs change, so she changes with me. 

These changes got me thinking about my history of mobility aides and all that I've been through in just two short years. 

"Meg" was around $120

I remember the day that I knew I needed mobility help. I was with my family in IKEA and I just couldn't keep up with all the walking. Instead I went from chair to chair resting as much as I could. I felt horrible and I knew there was something seriously wrong with me. I was right! Not only did I have Metabolic Myopathy at the time, but I also had a brain tumor. 

I shared with my husband that I needed a walker with a seat and we bought "Meg" that weekend. I still use her, but mostly for watering my plants or brining things inside my house from my car on my own.

"Shirley" was around $100

I bought this wheelchair on my own for bigger outings like going to an art gallery or being out all day. I still remember it getting stuck in an antique store and my husband accidentally almost dumping me out of it. Hahah! "Shirley" sucked going over anything other than smooth cement.

She was light enough for me to push myself and almost use her light a second rollator. She also collapsed and fit in our car nicely. She wasn't comfortable to sit in for very long though and really was made to "transport" people inside their homes or a hospital.

I still have her, but I will happily give her to someone who needs a transport chair.

"Dory" was $16K (but insurance covered it)

Getting my insurance company to pay for my electric wheelchair wasn't easy. UNTIL I was diagnosed with a brain tumor, then it went pretty quick. I got my chair "Dory" one month after my brain surgery. You can see that by the time I got her I was happy to have a new tool of independence. I still remember the feeling of climbing in and taking right off. The feeling of freedom and independence!

"Arial" was $3k

"Ariel" is my travel wheelchair. At the time my company was planning a trip to Hawaii in January and I needed an electric wheelchair. I also thought my husband and I might be able to travel more in the future. She is an incredible chair for travel.

Ariel was essential for the years that we didn't have a wheelchair van. At just 55lbs both my husband and son could get it in and out of our regular car trunk. Now that we have our van "Pablo" I keep her at my Mom's house as a backup.

"Pablo" was $61K

And here is our biggest tool yet. Our wheelchair van "Pablo". Having him enables me to always use Dory. It also gives me independence where I don't need my son or husband with me all the time to get my chair in and out of the car for me. 

Dory is the only thing our insurance has covered. Being disabled is insanely expensive. I'm very grateful to have a good primary care doctor who fights for me and a husband with a good job who knows how important it is that I have the right tools. 

How Dory looks today.

Current modifications around another $30K

(covered by insurance)

Why I love my wheelchair

I used to feel bad for people "in a wheelchair". When I was a healthy, able bodied person I had that common thought that people were "confined to" or "trapped by" their chairs. But as my mobility and strength worsened and I had to start to use mobility aides myself, I began to realize what I think all disabled people already knew all along. None of these tools are traps. None of them are confining or something to be pitied. For me they all represent freedom. Especially my wheelchair.

My mother was commenting the other day how I've always done things fast. Walk fast, eat fast, finish tasks fast, clean fast... That's very true. My son and I both walk very fast and have very long legs. My husband (whose the shortest one in the family) was constantly struggling to keep up. Until my mobility became a challenge. Then of course everyone was waiting on me. My chair gave me back that sense of freedom and independence, but it also gave me something else. SPEED!

I didn't even realize "going fast" was at all something I was missing. My husband will confirm that I used to not enjoy going for walks because it was too slow of a mode of transportation for me. I still remember the first time I sat in my chair and zipped down the street that thrill that I had in my chest. It was the same feeling as a little kid zooming downhill on their bike. And every time I'm alone and get to go fast in my chair out in nature I feel that same thrill.

For me my chair means independence. It's a physical extension of my body. It's nothing I'm "confined to" but rather something I'm fortunate to have! That's also why I like to name my mobility tools. Because to me they're much more than tools. They're blessings.

Disability 6 months in

You'd think after being off of work for six months that I'd be more adjusted and used to it then I am. But I'm not. I was recently approved to take my licensure exam, which when I pass, will be the pinnacle of what I went to school for. That's IF I can pass. Even if I can't actually work in this field again it's important to me personally to achieve that goal.

My symptoms are still worsening and my muscle weakness seems to be getting a little worse. It's mostly that constant pain that's worse. I always feel like I've been stretched on a medieval torture rack. 

Then there's the bad dreams. I have a recurring dream where I'm starting off walking fine, but then the pain sets in and I can no longer walk. I'm stranded somewhere with something I'm trying to do usually on my belly crawling. It's really stressful.

I also still think about my clients and my job that I had to leave behind. I don't feel like I have a "new life" or any kind of a "new normal" at all. Especially not with the world in chaos right now and trying to keep healthy. I feel stressed, upset and just heavy. Emotionally and physically. 

So rather than moan any more here's what I'm doing right now that helps me.

Ok, so that was going to be it... followed by another list of happy helpful things. But then I realized:
1) I'm not "moaning" I'm sharing important feelings.
2) It's my blog and I can write about whatever the f*@& I feel like.
3) I have no idea where this pressure to "not complain" on my own blog is coming from, but it's worth looking into.
4) I have a right to my own feelings.
5) Why am I underplaying things that are a big deal? Trying to brush them off? For me? For others? It IS a big deal and that's ok.
6) Where the F*$% did that come from anyway?
7) Yes I am disabled. Yes it sucks. It's ok that for now there's a period at the end of that statement.
8) Everything I do hurts me. It's just a matter of how much and is it worth it. I know I'm not alone in that, but sometimes it feels like I am.
9) Being me right now is exhausting. 
10) I hope my doctor gets back to me so we can try and find something else that will help.

(I'm not in the mood for pictures today, and that's ok too.)

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!