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.

The Month That Was

Since I didn’t manage to post any weekly updates in February, I’m going to do a monthly review—even though we’re in March now. 

Hello March! It’s great to see you.

-  February was a rough ride. I’m still trying to recover from the intestinal infection that started months ago, and I had to spend much of the last few weeks unable to leave my bed or couch. But I feel like I’m finally turning the corner. I had to cancel my brain MRI at Stanford (this is the third time I’ve had to cancel it), which doesn’t help my terrible record so far of showing up to appointments in 2016. 

Struggling to show up has made the emotional frustration of illness unmanageable. I put off writing this post until I could get my frustration under control. I can manage being bedridden and very ill for weeks on end but when I can’t show up to appointments, manage my care, or accomplish any of the basic things I need to do every day, then the frustration becomes unwieldy. 

The last few days have been better though. We’re having an unseasonably warm patch here in California. It’s hard to feel down when the sun is shining like it is.

- I’ve been very active my whole life and even though my body continues to become more limited, I’m still militant about exercising—to the point that I’m constantly overdoing it. I’m still learning that I can’t do the exercise I want to do. I have to do what works for my body and adapt to its abilities. The last few weeks, as soon as I start to feel a little better I try to get back on my stationary bike and then end up bedridden again. Exercise is essential for managing Dysautonomia and fending off de-conditioning, but since Myasthenia has taken over my body as well, I’m very limited in what I can do. If I push my body even slightly past its limits, the weakness turns into paralysis and my breathing completely shuts down. It’s really not cute.

So I’ve been starting to scale back and adapt my exercise routine. I’ve been doing a mix of simple yoga, pilates, and some of my physical therapy exercises in the morning, and I am seeing results! Usually, on the days I exercise I’m tapped out for the rest of the day but doing these simpler exercises doesn’t completely wipe me out for the day. I’m able to accomplish more.

A few years ago, I started to suddenly have balance issues and the problem, like many of my other symptoms, has only worsened since then. I do the exercises my physical therapist gave me to treat the balance problems but they’ve never helped much. They would only make a dent and wouldn’t have much lasting effect. It’s hard to tell but it seems like doing yoga poses every day actually has. I do the poses between a table and a wall so that I can catch myself when I inevitably fall. I used to do yoga regularly but this is a simpler version of what I used to be able to do. The poses I do that target balance are warrior pose, tree pose, balancing stick, and triangle. I often meditate after I do my exercise. Exercising is working best for me in the mornings right now so I'm rolling with it.

Yoga is definitely not for everyone so if you are considering it I’d recommend talking to your doctors or other medical professionals first to see if it could help you.

Doing Tree Pose like a boss. Like a wobbly boss

-  My improved balance has helped my mobility too. I have had to use mobility aids for a few years because of weakness from Myasthenia, balance problems, and orthostatic intolerance from POTS. Basically, whenever I am upright and moving my body is screaming “WHY WOULD YOU EVER DO THIS TO ME”. Yet, I still push myself to move. I try to get out and walk every day with my trekking poles, which my physical therapist suggested. They let me use mostly my upper body when I walk since my weakness is mostly concentrated in my legs and they give me added stability.

Last week I actually made it farther than I have in many months. I made it all the way to the corner of our street (about half a block). I was starting think I’d never make it that far again but I did! Husband took a picture for me to commemorate the moment. I’ve been walking to this point almost every day since! I'm thrilled.

-Monday was Rare Disease Day, which started initially in Europe but now has become a global event. The definition of a “rare disease” sometimes varies between countries. In the US, it is defined as a disease that affects fewer than 200,000 people. Myasthenia Gravis is considered a rare disease but POTS is considered a “rarely diagnosed” disease. Statistically, 1 in 100 teens are affected by Dysautonomia, but it is much less common to have initial symptoms later in life (which is what happened for me). Since Dysautonomia is an umbrella term, there are rare forms of it that qualify as a “rare disease” such as Pure Autonomic Failure or Familial Dysautonomia. Ehlers-Dalos Syndrome, a rare connective tissue disorder often associated with Dysautonomia, is a rare disease.

Rare Disease Day is a great opportunity to raise awareness about rare diseases since research and treatment options are so limited for these diseases and patients typically must endure many years of testing and even misdiagnosis to finally get a true diagnosis.

I had hoped to bring you information about the event sooner but I’ll have to aim for next year. We still have Myasthenia Gravis Awareness month in June, Invisible Illness Week likely in September, and Dysautonomia Awareness Month in October, but every day is an opportunity to raise awareness!

MyAware Ireland shared this video on Monday with a brief explanation of Myasthenia:

- A few posts ago, I outlined some of my goals for the year and I mentioned that I wanted to work on a few projects with husband, including my mom’s antique armoire she gave me many years ago that’s been sitting unfinished in our garage. A few weeks ago, I went out into the garage and husband had moved it into the middle and he said “let’s make it happen.” 

I can’t remember when my mom bought the armoire but I know I was a teenager or younger. She decided to refinish it and sanded it, but never finished it and decided to get rid of it. Before we moved to Nevada, I told her to keep it for me so I could have it someday. It’s sadly been sitting in a garage unfinished for over a decade but we finally finished it! Husband did about 85-90% of the work, but now it’s sitting in our room and I’m over the moon that it’s finally back to its full glory. I wish my mom could see how beautiful it turned out.

- I was supposed to spend Monday this week lying in the VERY LOUD TUBE for an hour and a half doing my brain MRI, but instead I was home working on recovering from February's douche-baggery. Instead, we played games with our friends. Game time is serious business for me, husband, and our friends. We try to play once a week and have been for years. Now, they move the table to the couch so I can play from there. It’s hard to feel down about life with good friends like this

All my favorite beards

I hope all of you out there are doing well! 

Lamentations and Celebrations

This month has been a bit of a whirlwind, a blur, a catastrophe, a gift.

Physically, I have not been doing great. I’ve had some pretty severe insomnia. I’ve been an insomniac my whole life and in moments of stress and physical strain, it gets significantly worse. I’ve had a few nights this month where I don’t fall asleep until the sun comes up. Then sleep for a few hours and get up so I can stick to the strict med routine. Naps are the worst thing for insomniacs so I trained my body not to nap many years ago. Naps and I aren't on speaking terms. Sleep is the most fundamental element for staying afloat with chronic illness, and I need it to breathe ok. But I know eventually things will normalize. Although I don’t think I was ever meant to be a norm.

We had the celebration of life gathering for my mother two weeks ago at my parents’ house. A gathering was the best way to celebrate her since we’ve had so many at their house throughout the years. I was worried about being able to show up and interacting with so many people, but I managed to piece myself together enough and I did it. It’s brilliant sometimes what strength we have in our depleted reserves that we are able to tap into sometimes. It was actually a wonderful day. 

I saw many people and family I had not seen since I was very young. About 70 people came, which is a testament to the impact my mother had on people. I wish I could’ve had more energy to talk to more people and hear more stories, but I’m satisfied with what I was able to do. It was a day injected with positivity and love that me, my sister, and my step-father all needed after the trauma of the last year. It almost felt like an episode of “This is Your Life” with seeing people from different eras of my life at the same time, all coalescing around the influence of my mother.

Almost my whole gymnastics team reunited. We reminisced about all the trouble we caused together 20 years ago

Now I’m working through the grief—in a haphazard fashion because I’ve never done this before. As my mother was in hospice care, I had anticipated that this part would be easier. I thought since I had a chance to say goodbye, and I was able to prepare, minimally, it would make grieving easier. I would feel relief and gratitude. I do feel those things, but they are muddled underneath giant waves of regret, sadness, and disappointment.  

We had a slideshow of pictures of my mom at the gathering and looking at them felt like falling back in time, back to when my mother was my best friend and we could laugh and talk. Back before I was ill. Back when my family was whole and all the pieces seemed to fit together, unlike the jumbled, disjointed present that lacks congruity. But it was a day of remembrances and joy, and I'm incredibly thankful to have experienced it.

So I’m still trying to chart a path forward. Try to work through the grief of losing my mother far too young, the grief of losing my health and independence, and feeling tremendous gratitude for what I still have. Those remnants of what remain are gifts—treasures bestowed in the form of lasting relationships, talents, memories like movies I can still get lost in, and love that still reverberates all around me. I finally feel some comfort again when I listen to and play music, which is my greatest solace. If you walk by my house, you’ll hear Stevie Wonder, Van Morrison, Led Zeppelin, or Vince Guaraldi blasting. I'm still listening to the playlist I made of my mother's favorite music. You’ll also hear me playing some Elton John or jazz on my keyboard (and sadly not singing still but hopefully eventually), but I'm still playing. I'll always keep playing.

It was my birthday last week. It was a hard one but I still managed to have a good time. I went thrifting with my besties, which we haven’t done in some time. My nephews came over and brought me mermaid pajamas. Husband and I ate some sushi. All around, pretty solid. 

The best part was seeing everyone’s pictures for the “Go Blue on 22 for Dysautonomia” event I created on the Facebook page. It was a great way to raise some awareness communally and celebrate together. I’ll definitely do it again next year. Here are a few of the pictures a few people shared that day:

My BFF Carrie Anne and her daughter Isobel

My mother-in-law: A nurse, all around badass, and always my biggest cheerleader

My gorgeous sister and her friend Scottee

My sister-in-law who was born to wear blue

My crazy nephews

My BFF and sister in music Melynda

My Dysautonomia shirt I ordered didn't come, but I had a backup plan

Next year, I'm hoping I can have a bit more energy and focus and I'll put all the pictures people shared together and post them here. That was all I was able to pull off to celebrate Dysautonomia Awareness Month but I'm satisfied with it. It was a good day.  

After some time off, I have multiple appointments in November to prepare for, including one at Stanford next week. I’ve been debating not going to it the last six months because my appointment there in May was very disappointing, for a variety of reasons. There is an enormous physical and financial cost to going to appointments there. We have to stay the night now because I can’t do the 5-7 hour drive and the appointment in the same day anymore. I’m hoping this next one is better because it’s difficult to fend off the “I give up. Burn it all down” impulse and disengage from the medical process, but I’m going to put my head down, show up, do my job, and be there. It's all part of the ultimate quest for a better quality of life. I'm trying to remember that. It’s at least a reason to leave home, see the beautiful Bay, and miss my cats.

So thanks for the patience as I’ve been posting sporadically the last few months. I’m hoping to get back to life back to reality in the near future and start posting regularly again. I have a long list of posts to work on. I was even thinking about signing on for NaNoWriMo that starts on November 1^st, but I think that’s a bit ambitious right now. I want to stop putting off the book I want to write and just jump in, but I think I need some attainable goals right now; writing 50,000 words in a month just isn’t realistic right now. I’m going back to my goal of getting at least one post a month up. That sounds pretty manageable right now.

It feels a bit like I’ve drowning this year and then surfaced into a world that looks the same but has irrevocably changed. But it’s time to grow some legs and adapt to this new world. This year has been difficult, and when I look back at my birthday post from last year, I want to get some of that spunk and spark I had back. I will. I definitely will. Loss and grief do not "happen for a reason" but it is possible to find some meaning and learn from them. Here's a beautiful article that articulates this better than I ever could.  

I am learning good lessons from the ups and downs and still standing strong, even if only a few seconds at a time with the power of compression stockings. I have a good feeling about 35. Let’s do this. 

Go Blue on 22 For Dysautonomia

As many of you know, October is Dysautonomia Awareness Month and I had plans to celebrate on the blog and some other ideas, but with my mother deteriorating and then passing two weeks ago, my energies were focused elsewhere.

Yet, I did manage to create an event to celebrate. My birthday is this coming Thursday and I am asking everyone to help me celebrate and raise awareness by “going blue on 22 for Dysautonomia.” I’m asking everyone to wear some kind of blue and post a picture of yourself with the hashtag #Dysautonomia or #MakeNoiseforTurquoise on that day to help me raise awareness. Turquoise is the ribbon color for Dysautonomia Awareness. The event is on Facebook and you can find it here. If you are a patient, you can use it as an opportunity to discuss what subset you have and celebrate your own perseverance. 

Ask others to join as well. Since many doctors and patients have never heard of Dysautonomia, it is up to us to help raise awareness about this serious condition. More awareness can lead to more research and more treatment options for Dysautonomia patients, especially considering there are no treatments designed specifically for the condition. All medications patients use are taken "off label." Most importantly, with more awareness many patients will not have to go through years of appointments, tests, and doctors who dismiss symptoms as "all in your head," essentially a universal experience for many with Dysautonomia. 

Dysuatonomia is referred to as an "umbrella term" because there are many subsets of the condition 

Feel free to join and participate! I bought some special shirts for me and my husband that will hopefully come in time.

If you would like more information about Dysautonomia, you can find accurate information and more resources for getting involved at Dysautonomia International.

So let's make noise for turquoise together, celebrate our strength, and raise some awareness together!

Here are some past posts that are helpful to understand Dysautonomia and living successfully with illness:

What is Dysautonomia 

The Spoon Theory 

Why Getting a Diagnosis Matters 

Living Authentically with Illness

Things to Say to Someone with a Chronic Illness

Dysautonomia and Salt: A Love Story 

My Dysautonomia Story 

Navigating the Medical System 

What have you been doing to celebrate Dysautonomia Awarenesss month?