Friday, August 23, 2019

I Am Broken


I am broken. I am shattered, devastated.

Everything seemed possible last week. I've been waiting years to have my thymectomy surgery that will hopefully be life-changing. Husband and I have been meeting with a local thoracic surgeon since April, seeing him every few weeks to go over preparations and everything. We've been working on coordinating my husband's work schedule and his family's schedule because I was going to need extra help at home after the surgery. I had to do some tests including another dreaded Pulmonary Function Test in preparation.

The surgery was scheduled for August 15th. I was admitted to the hospital last Monday for three days of IVIG in preparation, to give my body the best chance to make it through the surgery. It's good I was admitted then. I would've ended up in the hospital last week anyway. My diaphragm was barely moving and my home infusions of IVIG didn't help. I was just a few days away from it being totally paralyzed. I have had a migraine for two months straight as well and got treatment for that while I was there.

I was calm. The surgeon went over all the risks multiple times but I didn't care. I was ready. I have been hoping this surgery is my golden ticket. I haven't had great success with any Myasthenia treatment so far. Some treatments have been downright disastrous. I've been homebound for five years, two of which I lived in bed. I lost the ability to walk three years ago. I rely on a machine to help me breathe. Husband has to help me with basic tasks. I've been hospitalized every other month the last year. This surgery was the chance to get some of my life back.

My surgeon visited me every morning in the hospital last week to just go over last minute details and questions. My neurologist would come each day too. Wednesday morning, my surgeon came in one last time to give me the time for the surgery early the next day. I asked if I could shower since I didn't know when I'd be able to shower again after the surgery.

Everything seemed fine. But when my neurologist came in that afternoon she had a strange look on her face. She said "has Dr. ..... talked to you?" I told her he came in that morning and we were ready to go. She said "well I just passed him in the hall and it sounds like the surgery is cancelled". She had to leave right after that. I didn't know what to think. There was no way it was cancelled. That wouldn't make any sense. How could it be over?

After she left, I was trying to eat my lunch while crying when the anesthesiologist came in to go over my questions. He hadn't heard anything. I couldn't talk to him. I was so upset. He said he'd find my surgeon so we could figure out what was going on.

My surgeon eventually came in and the look on his face said everything. It was over. He gave me a brief explanation but said he wanted to wait until my husband came so he could talk to us both.

After my husband came, my surgeon came in and explained that the hospital wasn't helping him coordinate my care after the surgery. I needed to be in ICU in critical care for at least a few days after. The danger was less the surgery and more how my body would cope after. I asked him for more information but he didn't explain. He was distraught, even angry. He said it was an incredibly hard decision but he was concerned for my welfare. I gave him a hug and thanked him for everything. I told him I understood it was a hard decision. I trusted him. I never felt comfortable having this surgery at my local hospital. They aren't equipped to handle my case. But husband and I had a great relationship with this surgeon. I trusted him implicitly. I am not angry him.

There's one person who deserves all of the blame: the specialist I was seeing at UC Davis for over a year. I was supposed to have the surgery there last year, where they'd be more than capable of handling my case. That specialist told me I needed the surgery but refused to let me see a surgeon. But the last time I saw him this year, he suddenly decided I didn't need the surgery after all and tried to tell me I'm in "remission". That's not even all he did. It gets worse. I'm still working on my letter to UC Davis and I will share it in full here when it's complete. I don't want any other patient to have to suffer at the hands of this specialist like I did. He ruined any chance of me having the surgery at UC Davis.

He deserves all of the blame.

My surgeon told us he talked to another thoracic surgeon at Stanford who helped him make the final decision to cancel the surgery. He gave me a referral to that surgeon. They already called and we see that surgeon at Stanford at the end of September. It's not a done deal. But I hope I can convince that surgeon to operate on me. I don't have a game plan if Stanford falls through. This is already plan C.

There have only been a few times in my life I have felt devastation this deep. When I had to resign from dream job as an English professor (exactly five years ago this week). When my mom died a few years ago.....

The hurt is so deep that it will take a long time to excise it from my body.

It isn't just the surgery. It's the cumulative, constant frustration and disappointment that I just can't cope with at times. I don't understand why it always has to be so hard. It feels like a cruel, elaborate joke sometimes. I'm still waiting for Ashton Kutcher to jump out and yell "you've been punk'd!"

I asked friends and family not to ask questions about what happened. I haven't been able to talk about it. I'm still trying to figure out how to even explain it since we never got a full explanation.

I've been spending time with husband, snuggling my cat, reading, and as always wrapping myself in a blanket of music, the way I try to get through everything.

I am heartbroken but I am picking up the pieces, putting myself back together, trying to figure out what comes next.

I will get there. We will all get there.




"Only when you're whole can you forgive.....it's a long, long climb. It's a long, long climb"







Tuesday, July 30, 2019

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




Tuesday, June 11, 2019

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"





Thursday, February 7, 2019

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




Monday, November 20, 2017

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.


Thursday, August 31, 2017

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





Friday, September 30, 2016

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.






Monday, September 12, 2016

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