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.

Time to shave my head again!

Hair is such a big deal for women. And men too. It's a symbol of a woman's sex appeal. Her virility and sensuality. Women spend insane amounts of time and money on their hair. I bet you could buy a house by the time the average woman dies with what is spend on hair care. Men do too of course, but really not to the extent of women.

Me right after this picture was taken.
"Mooooooom. Will you shave my head for me?"

Some of it is cultural of course. The hair salon becomes a sacred "Third Space." Especially if you're having a very long process done like a weave or braids. I can't think of a time in history where women weren't plucking, dying, shaving, braiding, fucking with their hair. I wonder why? Did you know ancient women used sharp sea shells to shave their hair? And Roman prostitutes bleached their hair blonde with donkey urine.

Different hair colors also have different meanings. Right? The flirty, ditsy blonde. Serious, mysterious brunette, fiery temperamental red head. Fascinating.

Post swim and shave

I have enjoying playing with my hair in the past. Different colors and looks. But frankly now that I'm older I just feel so over it all. Over the time, fuss, money, energy, supplies... all of it. 

I really love the look of a buzz cut. To me it "means business." I find it so sexy when a woman has a buzz cut, no matter the age. Men too. There's a Viking sex appeal to it for me. And oh my God is it easy and cool. Feeling the breeze on your scalp is a pleasure everyone should enjoy at least once in their life. 

Speaking of. I love to rub my hand on a shaved head. So do most people. The most common question I get when I buzz my hair is "can I touch it?" And if I know you, then sure! Rub away.

The A/C hitting my head during the summer heat feels AMAZING!

A woman with a shaved head says "don't fuck with me." She's a bad ass who doesn't care what people think. Even if it's from chemo or alopecia, that woman is a warrior. She's down for a battle and is fighting every second.

Whoa...

Maybe that's one of the reasons I do it? Maybe I'm showing people that I'm fighting every second of my life. That my mitochondrial disease has forced me to be a warrior. I had no choice. It makes my invisible battle visible in a way. Hmmmmm. I'll have to think on that some more. While I rub my "fuzzy chick head" as my husband calls it.

2025 Things That Help Me

Anything in the water is wonderful!

I've lived with chronic illness and disability now for a while. Through the years I've tried many tools to help me with my fatigue and muscle weakness. Many modifications as well. Here are some things I have learned that have been helpful to me.

1. Give in to sleep. I used to fight my afternoon fatigue like my life depended on it. I felt I was "weak" for giving in and resting. No more. Unless it's very important (I'm on a special vacation that I really don't want to miss a moment of), I rest every day. For as long as I need. Typically between 2-3 hours in the afternoon. I always feel better for it.

2. Use a stick. Even if I think I don't need it. I'm very prone to tripping and my stick has saved my ass more than once. 

3. Don't miss a dose. If I miss a dose of my medications I'm in hell. It's a very big deal with incredibly painful consequences. Now I let everyone I'm with know that and I set alarms. I never assume I'll just remember. Especially if my routine has changed and I'm out for the day.

4. I don't sweat "accomplishments." I used to feel huge pressure to "accomplish" as much as possible. To contribute something back to everyone and society. I let that shit go. Now I just do what I can.

5. Don't do standing what you can do sitting. Great advice. I try to remember this one as much as possible. Adding a stool to my bathroom was a game changer. I have low outlets there and a makeup mirror. Now I do all my bathroom grooming sitting down. A huge spoon saver.

6. Don't do it alone. I never go to any appointment alone if I can help it. I will always miss things that were said and the doctor's notes aren't always accurate either. But having my husband or my mom with me can not only help me remember what was said, but they can help advocate for me too if needed. Or help me remember things I was going to ask about (if I didn't write it down ahead of time.)

7. Keep good records. Keeping a list of all my doctors, their contact information and a list of my medication has been useful more than once. If I have questions going into an appointment I also try and send them ahead of time and bring it written down with me. I hang on to "after visit summary" sheets if it was an important appointment, if they gave me a referral or if it have medication changes on it that I need to remember.

8. Say "No." I'm still working on this one. I've gotten better about turning down things when I'm too tired, but I still can feel like a "flake" if it's too last minute. That also goes for modifying what I'm doing as I'm doing it. Leaving early, cutting outings short, etc...

9. Keeping things easy in the kitchen. Buying things pre-chopped (or getting my husband to do that part for me), having a food routine and having groceries delivered have all been helpful "tweaks" to how I used to do things in the kitchen. Also, using a stool when I cook is very helpful. Again... see #5.

10. Not putting pressure on myself. Period. This goes for sex, grooming, accomplishments, sleep, parenting... I tend to be an organized perfectionist, but that doesn't mesh well with the life of a chronic illness spoonie. My illness takes precedent and everything else comes second. It is the biggest part of me and demands to be accommodated. I try to keep that in mind of give myself grace.

The Chronic Fatigue Sled

I've been in a tough spot the last few weeks both physically and mentally. I've been pushing myself really hard physically to try and have a "normal" life. Cleaning my house to have company over, entertaining my sister and baby nephew, cooking for them, cooking dinner every night, walking the dogs, playing with the dogs, feeding the dogs, holding the dogs, doing laundry, cleaning our bathroom, vacuuming, corresponding with friends and family. All of this has led to a series of crashes where I can't seem to sleep at night or get out of bed during the day.

I'm also trying out a new pain medication that could be giving me insomnia and more fatigue. I'm not sure since I always have both pretty consistently. 

Me on an Icelandic Glacier 11 years ago when I was healthy

This morning when I just couldn't get up, even though I was mentally excited to go swimming with my mom and spend the afternoon with her, I had a thought. The weight on my body dragging me into bed feels very physical to me. The way I push myself every day and how hard I push feels incredibly physical and mental. Beyond what healthy people experience.

I realized that I felt like one of those arctic sled dogs. Alone and hooked up to a sled weighed down with boulders. On a regular day I push and push through the snow trying to make progress on a steep mountain. So steep I can't even see the top of it. 

Then I just can't go on anymore and I collapse. Sliding back down the trail. Letting the sled pull me down.

When I've recovered enough I start pushing again. Running up the snow, pulling the sled. The weight of the sled may change depending on what's going on with my body. The only thing I know for sure is that I have this urge to keep pulling it up and that back sliding is un-avoidable. 

Days like today feel like that. Like the weight of the sled was just too much and it pulled me back into bed as time slid past me. Well into the late afternoon I was finally able to get up. I feel the pull of needing to accomplish things. Anything. And I push again.

I think what I need to learn to do is pull a little and rest. Pull a little and rest. I need to implement my vacation rules. No more than one big thing per day. 

And if there are days where I just stay in bed and rest... that's ok to.

My Hindsight Is 20/20

When I first started this blog six years ago I was terrified. I felt like my whole body was failing on many levels all of a sudden and I didn't know why. Feeling like I had no control over what my body was doing was very scary. 

Looking back I can see little threads of struggles all through my life.

I was a very tired kid. I had serious sleeping disorders. Nocturnal panic attacks, sleep walking and talking. I fell asleep at school frequently only to be woken up by an annoyed teacher. I always had "growing pains" in my legs where my legs would just ache for no reason. My mom even took me to the pediatrician for pain in my legs. I remember it being dismissed as "growing pains" (which are not a "thing" anymore thank God.)

My back hurt almost all the time. When I would be roller-skating with my best friend (a favorite activity of mine) I would need to take breaks and she would rub my back for me. It was one of those things you don't know is abnormal because it's all you've ever known. Looking back now I see red flag after red flag that I had some kind of health issues happening.

As I grew so did my strange health symptoms. I had endometriosis so severe that I had five laparoscopic procedures to remove abnormal tissue by knife and laser. It grew on my bowels, bladder, intestines, uterus, ovaries, pretty much everywhere it wasn't supposed to be, causing me incredible amounts of pain. Now we know so much more about it and what a serious disease it is for women. But back then the male ER doctor just smirked at me insisting I had an abortion when I wasn't even sexually active. 

My thyroid failed, then my gallbladder. I had mysterious Fatty Liver Disease and just felt tired and drained all the time. I struggled to live a normal life and work 9-5. My physical stamina was never the best.

My one child was diagnosed with Autism very young. Researchers now know that women with autoimmune diseases are much more likely to have Autistic children. 

I had many moments before any official diagnosis or my brain tumor where I just felt like "I can't do this anymore. I can't go to this (class, job, meeting, coffee...) I'm just too exhausted." I'm not sure that's actually normal.

This was all before the TB. Before the craniotomy. Before I needed any mobility device. So was this just a sneaky genetic malfunction that has always been with me? Or did my propensity to health challenges hurtle me down a spiral of worsening issues? It's interesting to look back and follow the threads. Regardless of the causes, to me it looks like one massive web.

What a Difference!

 A few days ago we had our holiday open house. The last one we did in 2021, two years ago. Here's me in 2023 (left) and 2021...

Even though I look happy in both and am smiling in both, I look a little weary and fatigued in the right one. And it's not just the natural hair. Although after seeing these picture I don't think I'll ever have anything other than black hair again.

I'm close to the same weight. My makeup is similar. But as my mom likes to say "You look about 20 years younger!" I feel about 30 years younger.

I'm savoring this Christmas season. All the bustle and time spent with family and friends. I've also been very creative this season. Doing pottery, making crafts to decorate my house, drawing on wrapped gifts. Even though we've been incredibly busy I've made time to rest too.

My husband even went with me to Yoga yesterday. He said he can see why it's so helpful for me.

What a difference two years, one year, five months, one day makes. I'm so happy to have my time back.

Social Diva

One of the things I hugely missed during the years of my illness was having a social life. I was able to have just enough, little tastes here and there, to make me wistful for my old days full of get-togethers. Mostly women friends, laughing, sharing our thoughts. I think friendships make us better. All relationships, but friendships especially. Friends broaden our ways of thinking and build our confidence.

Lately I have had a whirlwind of new and wonderful friendships. I met a woman through my husband's work who is delightful. We are very close to the same age and although we don't have a lot in common on the surface, we do underneath. I knew from the moment I met her that we are soul sisters. I enjoy her company tremendously and am grateful each time we are together that I have the energy for her friendship.

Recently we met her partner and to my great joy my husband got along swimmingly with him. This is our second couple friendship in less than a month. Where we love both people. Wow! That's incredibly rare. I feel very lucky.

Max got to come too!

This past weekend I was busy three days in a row. Something that would have been un-thinkable when I was ill. It felt rich. Like a bath in warm buttermilk, I felt enveloped and fully alive basking in the conversation and friendship of others. We are social creatures and I'm just beginning to realize how devastatingly isolating illness is.

Our California sunset. So beautiful.

 

"I've Got a Golden Tiiiiicket!"

Five years and four months.
314 Blog posts.
And...
IT HAS A NAME!

I have... (drum roll please)

LCHAD (deficiency)
Long-chain L-3 hydroxyacyl-CoA dehydrogenase

Say that ten times fast.

I'm so excited because once you know exactly what a thing is. What's wrong with me. Then it can be treated. I'm incredibly fortunate because I can treat my genetic mutation with just diet. As long as I avoid long-chain fatty acid foods, I have energy! This is incredible. I feel like Charlie Bucket who just found a golden ticket in that bar of chocolate. Except I can't eat most chocolate.

I need to avoid as much fat in my diet as possible. Except for (strangely enough) grass fed butter and all sheep and goat cheese. Those are all short-chain. Well technically the FOOD isn't a short-chain fatty acid itself, but that's what it produces in your gut. It's all very science-y and complex. Point is I can eat it. 

Celebratory mani-pedi day with my Mama

As you can imagine all my friends and family are over the moon for me. I just walked a mile and a half this morning at our local nature center with my husband. And WOW! Losing weight sure is easier when you can actually MOVE. (Who knew?)

I told my husband that I'm gobsmacked how much brain space it takes to just move around and exist in the world as a disabled person. "Can I fit through here, am I going to knock this over, will this make me too tired, will I get stuck?" I know this covers many disabilities and size differences. To have to give up sacred brain space to such basic ways of existing is awful. Or as my grandfather likes to say. "It's disgusting."

Just being able to go for a walk and not think about those things with my body is liberating. 

That's the word for it. I feel LIBERATED!
Liberate: To set free from restraint or bondage.
Yes. That's the word.

I've been eating this diet for over a month now. I'm completely off my muscle relaxer Baclofen, I was taking it three times a day. I'm eager to see how many of my medications I will no longer need, but I'm trying to take things slow. Not my nature, but I'm trying.

I'm also looking at joining a gym. There's been an issue with my mom's pool at her community and we're on the hunt for a new one. All of my new energy has to be put to good use somewhere. Meanwhile, Max is reaping all the benefits.

September 2023

September 2022

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.

Showing Up

My Mom likes to say that "Life is all about showing up." To me what that means is I need to make the effort to put myself out there as much as I possibly can. As much as I physically can. 

"Chat" bike ride at night

Although life happens at home, in my pajamas, declining party invitations. It also happens at the party in my nice new dress. It happens when I say "Yes" and engage in life outside just as much as inside. 

Humans are social creatures. We need to be around other people. That's why COVID was so impossible for so many people. Isolation. Being chronically ill limits how much I can be out in the world. It also limits what I can still do since COVID is still very much alive and contagious.

Coffee with Mom in her festive home

Sometimes "showing up" can look like entering a poetry contest from home or encouraging someone on Instagram. Other times it can look like spending my Mom's birthday at the zoo or having coffee at her house. To me engaging is simply making an effort. Not letting my pain and illness take over me and keep me in solitude. 

Enjoying Zebra at the Zoo

Thanks to my family and friends I have near constant engagement and many ways in which to "show up."

Max cuddle

What I Would Tell Myself

I've been on this journey for a while.

Being disabled.

Being chronically ill.

How far back do I go?

Where to begin "counting."

2 Years since migraine treatment began.

4 Years since brain surgery (2018).

4 Years since my first wheelchair.

5 Years since my first myopathy symptom (2017).

7 years since Tuberculosis (2015).

I think seven years is the start. 

It was that diagnosis and the treatment that followed. Nine months of intense antibiotics to try and rid me of TB symptoms. That was the catalyst. If I could send a letter to myself seven years ago. When the vertigo started and I couldn't drive. When my legs gave out on me and I crashed into a bookcase. When I cried hysterically in the hospital parking lot, terrified of what was happening to my body. What help would I offer myself?

I would tell myself...

"You're going to be ok. You're doing everything right. You will find fantastic doctors who will help you make sense of all of this. Go slow. Rest as much as you can. You will discover a 'new normal' with each stage you go through. You are incredibly resilient and so are those around you. Reach out for help when you need it. You're doing great by using mobility tools. None of this could have been predicted. You'll be surprised by how strong you are. Many people will help you through this."

What a journey it has been.
And I know there's more to come.
The only thing constant is change. -Heraclitus

2015

Where it all began

TB diagnosis

2015
Working out as much as I can

2015

9 Months of TB drugs

2015
TB treatment is at an end

2016 

Back for my last year of grad school

2017

Back to work

2017

Fatigue is starting to kick in

2017

Neuropathy starts

2017

Graduation from Masters Program

2017

Muscles feel weak and "funny" on vacation

2018
Wrongly diagnosed with Rheumatoid Arthritis

Feeling weak and tired

Working full time

2018
Ask for disabled parking due to weakness
I start using a walking stick

2018
I start using electric shopping carts

2018

I start using a rollator

because I need to sit periodically when out

2018

I keep feeling worse

I'm missing work

It's all very scary

Finally diagnosed with Mitochondrial Myopathy

2018
We buy our first wheelchair

a small transport chair

2018
I'm diagnosed with a brain tumor

2018
Going under for a craniotomy

2018

YAY! I didn't die and the tumor was benign

2018

My first big wheelchair

2018

We buy a travel electric wheelchair

2018

My first outing in an electric wheelchair

2019

Business trip to Hawaii

I'm still working full time

2019

Leg biopsy for myopathy

2019

I go down to part time work

2019

I stop working

I also start needing mandatory rest periods during the day

2019

My mom changes her plans and moves around the corner

2019

I'm finding my way

2020

We buy our wheelchair van

More testing happens, mostly to find my baseline

2020

Covid hits just as my medical team is coming together

2020

Swimming saves the day

2020

I developed migraines from my brain surgery

Botox is a lifesaver

2020

All the major fires are horrible for air quality

2020

I have my medications and supplements pretty dialed in

2020

My team checks on me frequently

2021

I have lots of love and family support

2021

My muscles continue their decline

I'm fit for a neck brace for extra support

2022

I start Amantadine and it helps a lot

2022

I go through Physical Therapy

for my neck pain and stiffness

2022

I go off Amantadine, relapse and find a new hobby

Pottery

2022

The pool is still a helpful escape

2022

I decide to keep my hair super short

due to decreasing arm strength

2022

I get assessed for a new wheelchair

PINK this time

2022

My migraines are stable with Botox

and Amivog injections

2022 - Today

I rest between 2-3 hours a day

Typically from 2-5pm

I spend a lot of time with Max

I'm with my Mom about 3 days a week. She makes me lunch.

My man has stepped in and stepped up. He does a ton around the house.

I no longer drive or can work for money.

I use my chair anytime I'm outside our home.

We're currently modifying our house to make it more wheelchair friendly.