A Few Things: An Update

I'm just going to share kind of an update of a few things for this post :

- I have a date for my thymectomy surgery! We've been meeting with the surgeon a few times over the last four months or so, and we had to keep putting the surgery off because of my husband's work schedule and family schedules. I'll be admitted to the hospital on August 12th for IVIG for a few days, and then the surgery will be August 15th. I'll be in the ICU for a few days after. The danger is not necessarily the surgery itself but if my body goes into a Myasthenic Crisis afterward and I'm not able to breathe on my own.

We don't know when I'll be discharged. I'm starting to feel some anxiety about it but I've also been waiting years to have this surgery. It's the best hope for MG improvement and I'm hoping it's my golden ticket to get something of a life back. I'm ready to be thymus-free and have this adorable, stuffed one instead.

I'm planning on writing a post before the surgery. I have a list of what I'm planning on taking with me and a list of goals I have after the surgery that I want to share.

- I'm doing a t-shirt campaign to help raise funds for medical costs and the surgery. There are only 2 days left to order one. I designed the shirts using my mantra I use every day, "Rise Above". I got the idea from someone I follow on Instagram. She did a t-shirt campaign to raise funds for medical costs and now whenever I wear the shirt she designed, I smile and remember how I got to help her out. Link is here 

- I walked with a cane without help for the first time a few weeks ago. It was a big deal. Husband was trolling me by playing "Neverending Story" in the background. Next walking video will have "Eye of Tiger" as the soundtrack or my beloved Maxwell for some groove.

- I've had an intense constant migraine for over a month and nothing is helping. I started a different migraine injection so I'll share if it helps or not. One of my goals after surgery is to try a different treatment than IVIG. I love that it allows me to breathe on my own but it has turned my chronic migraines into one constant, screaming migraine that nothing can kill. I'm not feeling it. I did get to experience a barfpocalypse when I went to the ER to treat it two weeks ago. The man in the bed next to me was scream barfing, which would trigger barfing from the guy in the bed in front of me, which would trigger barfing from the woman next to him. The ER is always a party.

- Speaking of IVIG, there is a national shortage of the drug, and I have spoken with multiple people who have had their infusions either delayed or cancelled. It looks like it's a manufacturer problem, but it is still important for people to donate blood because each bottle of IVIG is derived from thousands of blood donations. A patient wrote an article  about how to advocate for yourself during the shortage.

- Read this incredible story  by a man who diagnosed himself with Dysautonomia in the 90s and pioneered some of the treatments still used today for this condition.

- Illness sometimes feels like endless days of muddling through and just surviving, but something I have been doing for awhile now that has really helped me is creating things to look forward to. I'm working on a list of things I'm looking forward to the rest of the year. They can be small things like a particular flower blooming in your yard or a favorite artist releasing a new album. Whatever it is that keeps you going. I'll try to share my list sometime too.

- I woke up yesterday, and my respiratory muscles were almost completely paralyzed. Luckily it's infusion week and my nurse, who is a gem, got my IVIG infusion started right away in the morning. She brought my BiPAP out to the living room for me. I started crying while I was trying to eat. It's really difficult to eat when you can't breathe. She was really patient. I woke up breathing a little better today. I just have one more infusion. After #3 is when the magic usually happens, and my diaphragm gets with the program and starts moving again. I'm so thankful I am getting home infusions now. Otherwise I'd be in a hospital bed right now. I have to be able to sleep in my own bed so my cat has someone to yell at and snuggle in the morning.

Maybe someday after the surgery I won't have to do IVIG and my BiPAP and I can separate. It's not me BiPAP. It's you. I don't need you anymore. We'll always have the memories.

Maybe someday.


I hope you are all doing ok out there, and I send you my love and some good grooves

Here to Breathe Again

Hi there. Hello again. I haven't actually written in this space in so long but I've wanted to. I need a space to talk, to figure out, to make sense. This space used to do that for me. I'm trying to find my way back.

I've been home just over two weeks from my third hospitalization this year, the fifth since last August. My body refuses to keep breathing on its own. My limbs stubbornly refuse to move. I go in with a paralyzed diaphragm, unable to lift my arms or legs, sometimes struggling to swallow, get a few days of IVIG, go home and do ok enough on my own for a few weeks, then just start to quickly go downhill again. I feel trapped in this endless cycle, powerless to stop it. What is all the talk about "manifesting" the change you want in life? Is there an incantation I can say? A potion that will give me some control back? Do I say "Beetlejuice" three times in front of a mirror?

Or I guess just accept that this is what life is right now.

Husband and I are pros at this hospitalization thing now. We know exactly what to do. My diaphragm becomes paralyzed over a period of time until I wake up one day and my respiratory muscles won't move. I can't inhale. It's like trying to breathe with plastic over your mouth. I'm usually anxious when I go to the ER but I know what's going on and what I need. I feel like I got lucky this time though. We got to the hospital fast, we didn't have to battle or explain, I was given IVIG quickly and I responded quickly. I was almost intubated but narrowly avoided it. I just keep wondering if my luck is going to run out.

I'm still recovering from this one. It was a bit of a nightmare. I was on the ICU floor the whole time. I had a dream roommate at first and then she was shipped out and they brought in a total nightmare roommate. After being unable sleep through the night because of this lady's constant yelling and demands, I ripped off everything, got myself out of bed, and escaped to the hallway. The meningitis headache from IVIG is always so intense for me and I couldn't handle the yelling anymore. I leaned my head against the cold wall for awhile and waited until I couldn't hold myself up any longer.

A nurse came over to tell me they were trying to find me a new room, but they eventually moved that lady instead. I give the ICU step down floor one star: great nurses but it's not a place for any kind of recovery or healing.

My diaphragm became very weak again a few days after I got home. This is not how it usually goes after a hospitalization. I usually progressively improve and my diaphragm moves for at least 2 weeks or so. I don't know what's going on. I'm so desperate to not end up in the hospital again, I contacted my neurologist about adding a steroid to my regimen, even though Prednisone nearly killed me in 2016 and I swore I would never take it again. Every medical facility I go to, I make sure they put it on my allergy list. I don't want to die by Prednisone. There are better, more heroic ways to go out, like saving my family from a sinking battleship.

The real issue is I am finally FINALLY having thymectomy surgery this summer. I've been waiting years to finally get this surgery. There's research that a thymectomy is beneficial for any Myasthenia patient. You can read more about that here. The first time I ever heard about it was from my doctor at Stanford in 2015. I was doing better then and I am convinced if I had been able to have the surgery then, life would be very different right now. I doubt I would've lost the ability to walk. The specialist I was seeing at UC Davis the last year and a half also wanted me to do the surgery but he kept saying I wasn't "stable" enough. That doctor just strung me along as I continued to decline. It was a case of severe medical neglect that I'll talk more about another time. I'm never seeing that doctor again, and I'm working on a letter to UC Davis to talk about how angry and frustrated I still am. After telling my local cardiologist that once again another doctor pulled the plug on surgery, he just gave me a referral to a surgeon. We've met with the surgeon twice, and I am just so impressed with him. I was worried how much he would know since the surgery is mainly specific to Myasthenia patients, but he knew everything and grasped the complexity of my case within minutes, which never happens.

So the problem is this is a serious surgery. I'll be in the ICU for awhile afterward and there are a lot risks. Since my condition is already so unstable, the risks are even higher. This is why I am even considering starting a steroid. At this point, the surgery is my best hope for a better life. The surgeon said my case is too severe to go into remission, but I should at least have some improvement. The goal is no more hospitalizations and to lower my dose of the toxic immunosuppresants. In my mind, this is my golden ticket. It's what is keeping me going right now. I have to be ok enough to get this thing out of my body. It's getting an eviction notice.

I also want to get it done before another doctor pulls the carpet out from under me again.

So all of this has obviously created some debilitating stress for me. I haven't felt stress like this, like I need to scream all of the time, since my mom was dying in 2015. Even my husband is struggling with the stress. We're both really tough. We always find ways to cope, especially with heavy doses of sci fi tv and YouTube videos, but sometimes the weight is too much to bear. We're both working on trying to limit the stress we can control. I started a teletherapy program to work on coping skills, I fired my specialist at UC Davis who only caused more harm, I'm trying to keep my mind occupied and make better choices. But damn this is hard.

So you have to find ways to shine on and keep going. I focus on small joys and that helps. I feel most down at night before bed so I think about what record I'm going to listen to when I wake up and making coffee (I gave up on being clean and sober from coffee the last 7 years. I need a vice). Whatever it takes.

Coming back here is part of that. I had to write this on my phone a few minutes at a time, but it worked. I was worried that my writing here would be too depressing, but I've decided I don't care. So let's celebrate catharsis, the struggle for hope, and the healing power of coffee. And keep on writing...

"I'm not afraid
All is forgiven
Because after all
What's done is done....

Where I'm from
We carry on
And keep on running"

Sync

I had a dream
I fell out of space and time
I ran through corridors of moment
Desperate to find my way back
To my temporal space
Trying not to look to my right, where the future
Bared itself, real and ready
Or re-witness the past
I don't want to know
I kept seeking a present
That made sense
To find my way back

But I woke up still running
The beat of my heart still
Out of sync
Too slow, too fast
Still searching
In a world
Where I've lost inertia
I fell off the merry-go-round
As it spins out of time
Just a blur, a schism
Nothing to grasp on to
In this lumbering gravity

Living at a slower pace
I've seen leaves turn red
Then fall and turn to stone
I've watched thousands of butterflies take flight
Regenerating into forests
I've held a dying star in my hand
Watched galaxies congeal and melt
Where the cosmic colors converge
And tendrils of life seek then recede

But I never found my way back
I lost my present
And now this body always drags slightly
Behind the beat
Yet still
I am home

Some Thoughts

I have some thoughts I need to get out and I need a space to talk. 

I'm having a hard time getting myself to keep going right now. It's been over 2 weeks since my trip to the UC Davis Myasthenia Gravis Clinic but I am still trying to recover. I'm just so tired. So completely worn down by having to fight so hard all the time. The doctor I saw at Davis told me the treatment I've been on and state I've been in the last few years is just "barely keeping you out of the hospital all of time." When she said that my whole body sighed in relief. It isn't my fault. I'm not a failure. I've worked so hard to try to improve and get my life back but I haven't been able to make any significant strides toward improvement, no matter how hard I've tried. It's not my fault. It's not my fault.

I wish I could communicate what's it's like to always live precariously on the edge, to always have to fight so hard just to maintain. I can't though, not right now at least. 

I'm so tired. I just want my freedom back, to not have to look at the clock constantly because I have to rest every hour. I want to be able to move, to make plans, to play music, to see friends. I want to have a life again. 

We go back to Davis in a few weeks and that appointment will be much harder than the last one because I have to do an exhausting test in the morning then multiple hours of an appointment after. But my doctor is going to create a treatment plan with this appointment. There's hope. I'll finally have a treatment plan from a Myasthenia expert who can make sense of this magical medical mystery body. There's hope.

But right now I'm tired and worn down. I'm listening to Harry Potter and rewatching The West Wing, two things I always turn to when I need comfort. I'm angry, I'm frustrated, I'm disappointed, I'm happy, I'm sad, I'm laughing, I'm crying. I'm too tired to make sense of it so I'm just going with it. Push to the other side until I can't push anymore.

So I'm in bed eating my lunch, trying to hold my body up, listening to my cat snore, and watching the bluejay eat the bird food my husband put out outside my window. If I live in these moments, I'm ok. So right now, I'm ok.

In Stillness

You may be wondering why I haven't written a blog post in a year. There's a long, complicated answer but in short I've been bedridden the last year. The day of my last post was actually the first day it started. I finally started aggressive treatment for Myasthenia Gravis last September but that treatment made me sicker than I've ever been. I am doing better than I was six months ago but I haven't been able to fully recover and leave my bed for good. I'm not sure what's going on and neither do my doctors. It's a long story and someday I will have more strength to discuss everything that has happened. It's another link in the long narrative of "Inexplicable Things My Body Does No One Can Explain". In the meantime, here's a poem I wrote in my journal a few weeks ago:

"In Stillness"

In the stillness I exist
Not in motion
Motion is still
Still
Where life is slowly
Tubes hanging from my face
A machine breathing for me
Pulling life in and out
In stillness
A portrait of a woman frozen in time
As fibers inside bend and break
With the turning of the world
Still. I am still
Waiting for a tomorrow
Dreaming of a yesterday
To be in motion once again
To feel the spinning
Like laughing on a carnival ride
As lights burst all around
In the candied popcorn air
Spinning
Only stillness now
But in stillness I am strong
In stillness I can fight
I gather knowledge
I smell of lavender and stale air
Green tea and vomit
Salt and ginger
In stillness I survive
In stillness I fight on
Faster than any beating heart

Spinning outside

Me, Mopar, BiPAP, in stillness

Invisible Illness Awareness and #MyVoiceMyBody

This week is Invisible Illness Awareness week and although technically this entire blog and everything I share on the Facebook page are related to invisible illness in some way, I wanted to write a specific post to celebrate the week.

There are many issues related to invisible illness that are near to my heart but one point I hope to make by sharing my story is the importance of maintaining authority over our experiences of illness and our own bodies. So many of us suffer through years of being told "it's all in your head" by doctors or told we don't qualify for treatment by insurance companies because we don't fit into a specific label/category or told we aren't "technically disabled" by government assistance programs. I've been told all of this. We see illness and disability misrepresented in media or appropriated for the able-bodied.

It's difficult to quiet the noise sometimes and remember to find our voice again and reclaim the authenticity of what we experience.

For so long I hid my illness and didn't talk about it. I thought if I could just ignore it, I could control it and make it go away. I internalized the voices around me and even punished my body for not adhering to what I was being told: if it truly was all in my head, I thought I could force my body to just comply. It only made me worse.

But going through this made me realize that honesty with myself, with those around me, with the medical community (and refusing to believe I was wrong) was the only way I could achieve acceptance and find a path forward. When I started to be honest, I found that I coud reclaim authority over my body again with my voice. I didn't have to live in terror or punish my body for its refusal to just get back to "normal."

I had to find my own truth again.

Starting this blog and talking about my experience on social media has helped me rediscover that truth and live honestly. It has helped me understand that I cannot control my illnesses but I can control how I respond to them.

I try to represent my experience truthfully, even though it may create cognitive dissonance for some. There is no rhyme or reason with illness. Sometimes you have good days. Sometimes you have bad. And there's a ton of grey in between.

These picutres are an example:

The one on the left was from a few days ago. I've had to spend most of the last two and half months in bed. But every day I wake up, I put some make up on, I get dressed, and I hope today is better than yesterday. I don't feel the part, but I want to look it. I wheeled myself outside and took a selfie. I posted the picture on my blog page and talked about finally getting the Myasthenia diagnosis last month and finally starting treatment. I was feeling ok at that moment and feeling positive about the future. I wanted my smile to represent that. I even put a scarf and earrings on. Bonus points!

Sometimes people will comment about how well I look. I know whatever I look like on the outside belies how I really feel. But I also like puting in the energy to feel good about myself and hoping my body in turn feels a little better. Sometimes it works.

Not long after I took that picture, I had to go lie down with my BiPAP and rest. That is what my day entails now. I have to spend either most of the day or just the afternoon in bed on my breathing machine. I look like a comic book villain when I wear my mask but at least I have some mascara on. You have to own it.

I post pictures of myself when I'm wearing my BiPAP too. I try to make fun of myself sometimes but I also want to represent my experience truthfully. The two pictures are a dichotomy but often that's what illness is.

Whenever I talk honestly about my experience of illness, I have started using the hashtag #MyVoiceMyBody as a reminder that I'm not trying to fit into anyone else's expectations about illness or disability; I'm using my voice to represent my truth. I hope anyone who is reading this will join me in using the hashtag.

Use it to talk about your diagnosis story, use it to spread some humor despite the horrors of illness, use it to raise awareness about your specific condition, use it to make illness (physical and mental) visible, use it to speak your truth and reclaim authority over your own experience.

Over the years, I have found that too often when we speak our truth about our experience of illness, that truth isn't visible for a wider audience. Either we talk in closed groups and message boards online or behind closed doors. Many able-bodied people and many in the medical community have no idea what living with an invisible illness entails. They don't know that so many of us suffer for years without a diagnosis. They don't know that our experiences have been misrepresented. They don't know how good life can be despite illness and all that you can learn from it.

The writer Cherríe Moraga said "silence is like starvation." Speaking your truth is a form of power, a means of survival. When others hear our stories, the stories can raise awareness and inspire change.

All I want is for no one to ever have to hear either "you're wrong" or "I don't believe you" ever again.

So I'm hoping by making illness visible and sharing our truth, someday no one will ever have to hear that and go through the same suffering.

Because this is my voice, this is my body, this is my truth.

Momentary Distraction

So much has happened since the last time I posted but I am still not doing well enough to type an update. I'm writing this on my phone. I've spent almost all of the last two months in bed on my BiPAP, recovering and trying to improve. I'm not there yet but I'm starting to get there. In the meantime, I'm going to try to share some little writings and crappy poems from my journal that I still write in almost every day. That seems manageable. I wrote this one a few days ago:




I crackle
I break
A body with a language all its own
No one can decipher
But a petal here
A petal there, look
It bends, snaps
A momentary distraction
Pause the piecing together
Holding limbs that fray and unravel
Clenching it all together for just a breath
To let it collapse
Look as it blooms
There's life pulsing there
A tiny blade of grass alone
A diaphanous web clinging in memory
Sunlight piercing trees
For just a moment the internal battle ceases
And I remember how to feel alive

Vacation!

I’m doing something crazy next week, something I haven’t done in years. We’re going on a vacation! I mentioned this before, but I haven’t left my town for something that isn’t medically-related in two years. 

Seriously. Two years.

I haven’t even gone to the next town over to see my BFF’s new place. She moved there almost two years ago. I haven’t made it to the Bay Area to visit my sister, about a two hour trip. She’s lived there for three years. I haven’t been to our favorite place, Sonora, an hour drive away, in two years, and the last time I went to Yosemite was three years ago. I haven’t even made it to any of my appointments at Stanford this year. I've had to cancel every single one. Travelling has become absurdly challenging, especially this year, so all of that has just not happened.

The last time we left town for something fun was when we went to Tahoe for a week with some friends two years ago. We had a great time. I wasn’t doing great but I was doing much better than I am now. I was still working at that time.  I had just survived the last semester I was able to teach and I was rapidly losing my mobility and independence at that time, but I wasn't completely couch-bound then. We played games most of the day and went out to eat most evenings. I sat on the porch that overlooked the forest and read much of the time. We went to the lake one evening as the sun was setting but I wasn’t able to last long so we didn’t get to watch the sun set.

The view from the porch. Ah to live with this view every day. What a dream

I ended up at the ER on the last day we were there. That’s a story I still haven’t shared on the blog yet and I still might someday. If I could create a dream ER experience, it would have been that. I was treated quickly and the ER doctor, who was probably younger than me, had heard of POTS. That ER was incredibly busy. I got an IV and some Zofran and as I waited for the IV to finish we heard someone have a heart attack, someone who drowned in the lake, and the man in the bed next to me was withdrawing from something. The ER doctor forced me to drink Gatorade which I HATE because I declined a second bag of fluids. I just wanted to go home. After one bag, I felt ok enough to make the drive. Anytime I need to go the ER, I dream about go that hospital in Tahoe.

Mustering a smile as the IV worked its magic

We didn’t know at that time that I also had Myasthenia Gravis. I was having difficulty breathing and the lack of oxygen at high altitude did not help. I hadn’t even told my doctors at that point that I was having trouble breathing. The mountain thunderstorms that were passing through made me severely nauseous. It was a bit calamitous but aside from having to go the ER, I look back on the trip with fondness. I had a great time. I’m glad we were able to go somewhere while I was still able to travel. 

I just wish we would’ve stayed at sea level.

So this year we decided to go to Monterey with the same friends and stay in a house for a week. As I’ve been going through the worst health crisis I’ve ever had the last few months, I keep thinking “I have to make it to Monterey. I will make it no matter what.” I haven’t really been focused on much else at this point besides trying to get well enough to make it.  

We planned this trip awhile ago and I always imagined that I’d wake up each morning while we were there and do my usual routine of yoga, stretching, meditation. I never imagined I’d be using my wheelchair full time instead. In a few days, it will be two months since I’ve been unable to walk or stand. It’s not how I imagined this trip but it doesn’t mean I’ll enjoy it any less. We were planning on playing a lot of games too but more than likely I won’t be able to participate much, but that’s ok.

As a lifelong Californian, I've been to Monterey many times over the years so I definitely won't feel like I'm missing out since I'll have to spend most of my time on the couch while we're there. We were planning on going to the Aquarium, and that’s the main reason why we chose Monterey since the only way I could manage a trip to the Aquarium is if we stay multiple nights. I’m not sure I’ll feel well enough for that but it’s not off the table. Not sure I’ll be able to make it to the beach either but I’m definitely going to try. I'm mainly just looking forward to being somewhere that isn't obscenely hot and getting a change of scenery, from my couch to another couch.

I’m going to try to take some time off from being engaged in the world. It’s election season here in the US and I’ve been completely absorbed in that, global politics, and the violence that’s happening here. I may spend all of my time at home, but I’m still an engaged citizen of the world. But I definitely need some time away from that and running through the list of the all the appointments and health management I need to do in my head every day. There’s always something I have to prepare for, plan, make calls about. I’m going to take a much-needed break from it all.

When I get back, I get about a week to rest and then I have to do the worst test ever again (the Single Fiber EMG) at Stanford. But I don’t want to talk or think about that right now.

I’ve been trying to figure out what a suitable number of books bring is. If we’re there for five days, is four too many? What if I run out! What if I have nothing to read! The horror. I’m just going to take it all. Two works of fiction, one of philosophy, one of poetry, and my tablet in case I need anything else. Seems reasonable to me.

It was over 100 degrees essentially every day for a few weeks here. I was telling husband that I don’t even know how to pack for this trip because I don’t remember what 65 degrees even feels like. I’m going to enjoy being able to wear my higher quality compression stockings with jeans and being able to go outside. It won’t get cooler here until November so it’ll be a nice reprieve from the brutal heat.

I went out into public for the first time in months last week and it ended up being a bit disastrous since it was 104 that day. We went to my favorite antique store. I'm hoping that the cooler weather will make leaving the couch a little more feasible but we'll see. 

Husband and I at the antique store. No amount of air conditioning could save me at that point but it was nice to get out

I've been carefully planning for this trip for weeks now. Traveling while ill presents enormous challenges and it's difficult to make contingency plans for every form of chaos that can ensue. I've made a list of everything I'll need to take, including my meds, my breathing machine, shower chair, inhalers, my provisions and electrolytes, etc. Anytime I think of something, I write it down since my memory is unreliable. I'm working on packing a little every day so it doesn't completely exhaust me too much. 

I'm just going to cross my fingers and hope for the best.

I’ll probably be quiet on the Facebook page but follow me on Instagram or Twitter where I might be posting some pictures.

I’m hoping to get a ctrl-alt-delete on life, a nice reboot, and come back feeling a little more refreshed and renewed. I'll be listening to this song over and over, enjoying a little reasonable sunshine.