All In One Year

 

My mother and I went spring garden shopping at our favorite nursery yesterday. It wasn't till my cart was full to bursting that I realized "Hey! This is my first time walking here!" Later on that day she sent me pictures of the last five years we were there. 

The picture above is 2023 and just below that yesterday, 2024. What an incredible difference a year makes.

I wish I could go back in time and tell myself to "Just hold on. Help is coming. You'll be here walking next year." What a miracle this still is.

I have a lot of pain and get tired. I need to remember to eat BEFORE I do something strenuous or exercise, not only after. Alcohol doesn't really agree with me anymore. When I was a wheelchair user I had far fewer after effects of drinking. Isn't that odd? Now my body's like "Heyyyy, we have enough going on without also metabolizing this poison you just drank." Fair enough body. I hear you.

Eight months ago that chair was still my only way to interact in the world. I call 2PM to 6PM "Magic hour" because that was the time I would miss out on every day. Every thought was about my disability and how I could best live my life. What tools I would need to get me through. How to explain my needs to people and anticipate them myself. Being disabled is exhausting.

Today was so wonderful planting all of my beautiful flowers. I'm not growing food this year in my raised bed. Just flowers and some herbs. I brought my back brace outside but didn't need to use it. Which is a testament to how much stronger my back and torso are becoming.

My weight is up, but I'm trying not to focus so hard on that. I'll be back at the gym tomorrow morning. Driving past my beautiful garden. 

Beautiful Garden

I did it! I did it! I finally asked for help! 

Well, I've asked for help before, but never for a big project. I'm a massive "do it myself" person. I always have been. Group projects in school? I detested them. Hated them at 10 and hated them at 42. I'm not a "let's work together" girl. AT ALL.

So this is a huge, momentous occasion worth celebration. I saw something that needed to be done. I assessed my ability to do the task on my own. Saw it wasn't possible. AND I asked my family for help. They were so sweet and jumped right in. The results are fantastic. We all brought our skills to the "clean up the back patio" project.

Farmer ME!

(I love my back brace.)

My mother knows a lot about plants, their needs and pruning. So she tackled my neglected pots. She also put together the beautiful Lodge grill that she bought three years ago. Finally we'll get to have some family cook out's back there. That's her jam.

My son brought the muscle. He cleared out a lot of weeds, spread mulch, took out trash, filled our compost bin and just in general did everything I asked him to do without complaint. He's great at doing what you ask him to do, as long as you're specific.

We crushed my to-do list in two days and I'm thrilled with the results. I should have taken some "before" pictures, but here's the flow now...

Max enjoying his bed in the sunshine

Next to my new potting trunk

YAY! All my pots and soil are out of the weather.

Some of my beauties. 

Our new hibachi area. 

The pail is full to the brim with charcoal.

My mom suggested spray painting this table hot pink.

I'm down for it!

My beautiful freesias are in bloom.

Mom re-potted our big palm.

She's a gardening BEAST!

Newly fixed up plant corner.

My gardening table to the right.
The left is a long table and chairs for feasting and chatting.

Tomorrow my husband is going to help me with the lights and to hang some canopies on the pergola for shade. I can't wait to finish up and have it be our dining room. (Since we gave up the indoor one for his office.)

I'm very glad I asked for help and I will do it again in the future. Working with my family was much more fun than doing it alone.

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. 

Pretending to Be Normal

There are times where I just get so sick of my body and my illness that I have what I call a "normal burst." That's where I just pretend that I'm a normal, healthy person who can do anything they want. I resent my medications. I resent using mobility tools. And I hate that my body fatigues. So I just push and push and push till I completely gas out.

Today was a day like that. 

I had a lovely morning with my Mom and when I kissed her goodbye for the afternoon she said "Now go and rest." We had swam that morning (Well, I more stretched and floated) and that was good advice she gave me... But something in me said "NOPE! I'm going to GARDEN because I AM NORMAL!!!" It's like my inner brat breaks loose or something?!

So I did. 

I watered my garden and did some pruning and cleaning. I felt my body want to quit, but I pushed it. I pushed it when I knew I should just stop. 

Why? 

Because it felt so good to be out there doing exactly what I wanted to do for a change instead of what my body wanted me to do (which was what my Mama told me to do... go and rest.)

I often fantasize about the things my body used to be able to do. Snorkel, bike ride, hike, etc. I think that's super normal and I'm sure many disabled people do the same. Especially considering I haven't been disabled that long. It was just 19 months ago that I was snorkeling in Hawaii with my husband and work friends. No way could I do this today.

Sometimes pushing myself is worth it. 

I try not to push so hard that my muscles go into rhabdomyolysis. It has happened a few times in the past and I like to think I learned. Pushing myself helps me know my limits. If I don't go to that breaking point I won't know where it is. It also gives me a little taste of what it was a like to be my "normal" old self again.

Never a dull moment!

A few days ago an acquaintance said to me "You must get so bored sitting around all day. What DO you DO?" Once I got over my shock and the urge to smack her I took a breath and explained. "I am disabled. I have a chronic illness. This means I am always sick. I spend a lot of my time resting and I feel too ill to get bored". Although that is true, my days are also quite busy!

Here's what I had going on just this week:

My genetic testing kit came and my mother and I did it together. It took a few hours to register, answer questions and spit in a tube (surprisingly hard!)

It's rare that a week goes by that I don't have some kind of medical appointment. I saw the ENT the other day who confirmed I'm suffering from migraines and they believe that's the cause of my dizziness and foggy headedness. Good to know! Now on to treatment.

My mother drove us a little over an hour away to meet a friend for a delicious seafood feast. I had a headache the entire day, but I didn't let it stop me from having fun! The ocean air was rejuvenating and the view of San Fransisco was breathtaking. 

I get easily impatient with my hair and hate what I call the "Soccer Mom" phase of growing out a pixie. So I gave myself some baby bangs just for fun.

After both the neurologist and the ENT said I'm suffering from migraines (vestibular and intractable) I decided to try these "anti migraine glasses". They are a rose tint and are supposed to block out particular light that can cause migraines. I didn't think that they were working, but then I took them off to shower. When I got out I could tell my headache was MUCH worse. Back on they went and I can feel my headache easing. So weird! 

I think I have a very high pain threshold and so much other physical stuff going on that it never would have occurred to me that I had migraines. 

I'm also trying to gently get back into doing a little gardening. I find it very therapeutic and it keeps me eating healthy. My mom just bought me this beautiful cedar raised bed so I can easily garden while sitting, It's the perfect amount that I can manage. I'm hoping to get some herbs and lettuces for winter going soon. 

So no. I'm not "bored". I still sleep in, rest, take naps and try to go slow. But I keep both mentally and physically as active as I can and I'm always seeking out new tools to improve my quality of life.

(I received no incentive, kickback, discount or payment for ANY of my links.) 

More Testing

Spring officially begins this Wednesday, but it has been in my neighborhood for a few weeks now. Last week I took a few minutes off at work to roll around our complex and soak in some sunshine. Of course I couldn't resist picking this lovely sweet smelling dandelion for my hair. I forgot it was there and by the end of the day it looked like a dead bug crawling above my ear. Hah!

Friday I had three doctors appointment. One was a pre-op for my thigh muscle biopsy and the other two were for my heart. I was having some scary issues crop up, but since increasing my Q10 dose they had gone away. My PCP made me go through with the testing anyway.

In spite of (or because of) my busy day I found the time to get my nails done. It has been a nice little treat and a good way to spoil my body. Keeping body positive is important when struggling with a chronic illness, at least for me.

I told the echocardiogram tech that I was nervous about the scan since the last time I had any major testing they found a brain tumor. She assured me that she wouldn't find a brain tumor.

Apparently I have a big tough heart. I could have told them that!
In all seriousness, I won't know what this means till they get the results of the 24hr halter test back. And the cherry on top was I was allergic to the adhesive pads they put the EKG monitors on with. Hello raw skin and rash! -sigh- 

But nothing lifts my spirit quicker than a little snuggle time with my 12yo Whipped Terrier mix "Sweetie."

With my increased strength and stamina I've also been out gardening again with my husband. It feels so fantastic to be productive, instead of just watching him do everything.

I also decided to buy myself a cane. It was the one piece of mobility equipment I didn't have. I had been using my Nordic Poles as a walking stick and they're great in the garden or off-roading. But for just help with balance and stamina in say a store or going down the street they didn't have the stability that a cane offers. They're also a bit hard on my hands.

This cane is adjustable with a big, squishy handle. And doesn't it look like a mermaid tail? I'm hoping I can use her at work and short distances, Meg my rollator for medium and Ariel my electric chair for far distances and out all day situations. Time will tell!

A year of struggle

In the beginning of May 2018 I had severe onset of muscle weakness in my arms and legs. I thought at the time it was a side effect from the DMARD I was on for RA. My neurologist believes I have a rare form of Muscular Dystrophy called "Metabolic Myopathy." If you get even more specific he thinks I have "Mitochondrial Myopathy." 

In short it means my energy cells, the mitochondria in my body, suddenly stopped processing energy the way that they should. It also means this can happen to any muscle in my body at any time. It just happens to be affecting my arms and legs right now. And yeah, it's also rare, progressive and there's no cure. I really need to start playing the Lottery.

So far I've had a countless medical appointments, a spinal tap, EMG, MRI, reflex tests, gene sequencing, scraped with a safety pin and in a few weeks we can add a muscle biopsy to this list. I've given enough blood to feed an ARMY of vampires, but it was all worth it just to hear my neurologist say "YES! You have something, and I think I know what might help."

I've been on a high dose of enzymes and amino acids for about 2 1/2 months now. It's literally the only treatment for my condition. I'm learning that the more rare the thing you have is, the less likely there's a current medical treatment for it because there's no profit in it. No profit to be made = no research = no treatment. Fortunately for me the treatment has just started helping. 

Gone are the 4 hour naps during the weekend. I'm actually able to help with dinner when I get home from work and get things done on my days off. My muscles are still much weaker than they were a year ago, but I have far more energy than I have had in years and years.

Today I was able to go out in the garden and work in the yard with my husband. I can't tell you how fantastic it felt to be out in the sunshine moving my body again. I used my trusty Nordic Poles and took lots of breaks. Don't get me wrong, I was very spent physically after and I had to take an Ibuprofen, but I did it!

My husband has been buying me a lot of electrolyte water to see if that helps as well. I noticed my muscle weakness was better for a little while after my brain surgery in September. But I also realized they only let me drink blue Gatorade in the hospital (not water.) I connected that it might have been all the Gatorade that helped my muscles. Heck, I'm willing to try just about anything that can help. But I'm so thrilled we landed on a treatment that I'm responding to and a name for what it is that took so much from me this year.

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.

Today's a Good Day!

Today is a great day!

My pain is much lower today than it has been in recent memory. I slept 7 1/2 hours through the night and I was able to garden for more than just a few minutes. 

I spent a glorious 45 minutes this morning tending to my poor neglected plants. That was the first time in about 2 months that I did some light manual labor and didn't end up with shaking muscles and exhaustion from my efforts.

Two things happened yesterday that I think helped me. The first was I messaged my neurologist about the Lyrica not really helping anymore. I've been on it for 13 days now. She got back to me right away and told me to start taking it twice a day instead of once.

The other helpful thing was a suggestion from my mother that I take a dose of Acetaminophen close to when I take my 800mg Rx Ibuprophen. She said this is commonly advised where she lives (in England) for people with severe pain.

I gave it a try and had a lot of relief. I think that's why I was able to sleep through the night. Apparently that's very common in the UK for doctors to advise taking the combo like that. 

Despite all my efforts my mouth is still sore. I can feel it in the back of my throat, roof of my mouth and back of my tongue. I have an appointment this Friday with my primary care doctor, so I'll bring it up then. In the meantime though I tried just having yogurt for lunch.

Actually it's organic, fat-free Greek yogurt mixed with a dash of cinnamon, a drop of vanilla extract and a little gloop of local honey. For someone who hates yogurt I shockingly enjoyed it! I hope there are more good days in store. 

Growing Patience

As I said before, I used to garden a lot. I have a big garden where my front yard used to be and in the past have enjoyed growing lots of food for my family to enjoy year-round. I could spend about 2 hours in the garden working before getting pretty tired. That was about my limit. Right now my limit is about 15 minutes. That's a huge change. And to avoid the sun I'm typically out there at twilight.

Despite my husbands best efforts to keep the weeds under control it has quickly gone from "charming wild garden" to "out of control wilderness." Although I do get frustrated that I can't be out there as much as I want (even 2 hours was a lot less than I wanted.) It's also forcing me to prioritize and have patience.

One big change I'm doing this year is I'm not hand watering anymore. Believe it or not I used to get out there every other day with my hose and hand water every plant. Yeah... that's not going to happen right now. I also don't have the spoons or money to put in a drip system. So I went old school. Enter the sprinkler!

Even now when I see a sprinkler going I want to jump through it like a 7 year old again. There's just something summery and joyful about rays of water shooting up at high as your roof and raining down upon eager plants.

My fella installed it for me last night while I got my 15 minute "high priority" gardening done. That was the first time in a long while that being in the garden didn't make me want to cry because of what I "couldn't do." Instead I felt glad that I finally got to tackle the few things that I could do. And that hopefully what's already there won't die from a lack of watering.

Don't you just want to run through that?

Watching the water do its magic on my thirsty plants from my chair I realized that along with the sunflowers, my patience is also growing. I'm sure I'll still have plenty of moments of frustration, but hopefully they will come less often.

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!

Embracing Change (or not)

Over the last eight years or so I was bit by the gardening bug. It started off with just a few tomato plants crammed into a little spot I cut out in our front yard lawn and grew to a huge garden where our front yard lawn used to be. Gardening brings me a lot of pleasure. It connects me to nature and makes me a better person. How? By reminding me that everything has its own time and patience is vital to survival.

During the last 3 years gardening has become harder and harder for me. I'd love to be the lady you see in the arthritis commercials who pops a few Aspirin and runs out to pull weeds for hours. But my body just won't cooperate. My stamina is crud, my hand strength is minimal and now with the Plaquenil I can't be in the sun. Dang!

My garden in 2014

This is how my garden used to look. Ordered, planned, structured with just a HINT of wild. And this is how it looks 4 years later...

My garden today - April 26th, 2018

This is mostly lettuce that we've been enjoying.

It bolted very fast!

I've cried a lot about my garden. I know that sounds lame, but it's very frustrating for me not to be able to do all the things in it that I have in my head (or that I used to do. ) When I was being treated for Latent TB I'd try and garden like I used to and I'd end up vomiting every time. I'd push myself way too hard. Even though that doesn't happen anymore, tears aren't much better.

Apparently I still have a lot to learn about "patience" from my garden. Now she's turning into a wild space. I was looking out the window this morning thinking how beautiful it is. It's not "structured" like it used to be and I'm still frustrated that I can't do all the things I want to do with it, but it's beautiful and full of life.

That's a bit how I feel about myself right now. I can't do all the things I want to do, or how I used to do them. I'm learning a new kind of living and a new kind of beauty in life. It's not easy. Not at all. And I'm sure I'll still have moments of crying. But I see that it's also important for me to sit back, drink my coffee and notice the good changes too. Just like my wild garden.